AJND Discussion

 [9/16/22, 10:10:14 AM] AJND PaJR: ‎Messages and calls are end-to-end encrypted. No one outside of this chat, not even WhatsApp, can read or listen to them.

[9/16/22, 10:10:14 AM] Sanjana Palakodeti: ‎Sanjana Palakodeti created this group

[11/10/22, 5:40:47 AM] AJND PaJR: ‎Sanjana Palakodeti added you

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[11/10/22, 10:54:50 AM] ‪+977 981‑7599973‬: ‎‪+977 981‑7599973‬ joined using this group's invite link

[11/10/22, 11:28:05 AM] Dr. Kshitij Sharma: ‎Dr. Kshitij Sharma joined using this group's invite link

[11/10/22, 4:45:37 PM] ‪+91 77028 33115‬: ‎‪+91 77028 33115‬ joined using this group's invite link

‎[11/19/22, 4:39:54 PM] Dr. Rakesh Biswas sir:  ‎<attached: 00000009-PHOTO-2022-11-19-16-39-54.jpg>

[11/19/22, 4:40:56 PM] Dr. Rakesh Biswas sir: We haven't prepared our first draft of the current AJND article yet

[11/19/22, 4:45:07 PM] Dr. Rakesh Biswas sir: On Fri, Sep 30, 2022, 7:45 AM editorial . <editorial@ajnd.us> wrote:

Dear Dr. Biswas,

Thanks for your response. We are looking forward to receiving your new manuscript in the near future.

Best regards,

Editorial Office

American Journal of Neurodegenerative Disease

www.ajnd.us

On Wednesday, September 28, 2022 at 07:01:34 PM GMT+8, Rakesh Biswas <rakesh7biswas@gmail.com> wrote:

Yes we are preparing our submission. 

Thanks a lot for extending the deadline. 

best, 

rb 

On Wed, Sep 28, 2022, 11:36 AM editorial . <editorial@ajnd.us> wrote:

Dear Dr. Biswas,

We are writing here to invite you to submit your next exciting works to American Journal of Neurodegenerative Disease (AJND) for consideration of publication:

http://www.ajnd.us/

AJND is an open access journal that is officially indexed in PubMed and Google Scholar, and fully archived in PubMed Central:

https://www.ncbi.nlm.nih.gov/pmc/journals/1989/

To show our appreciation for your participation and support, the open access publication fee will be waived if the manuscript is submitted before February 28, 2023. You will receive an invoice on publication fee from our automatic online system once your manuscript is accepted. Please send an email to invoice@e-century.org for publication fee waiver by attaching this invitation to serve as our tax purposes, and our Invoice Team will take action accordingly.

Also, if you are interested in joining our reviewer team, please visit the weblink below to participate:

https://e-century.us/reviewer/app/index.php

Thank you for your time to read this invitation. We are looking forward to receiving your positive responses in the near future.

Best regards,

Editorial Office

American Journal of Neurodegenerative Disease

www.ajnd.us

[11/19/22, 6:24:04 PM] Arefin Sadat: Sir, please let us know what we can do next, or you can assign specific tasks to the respective persons, including me, to make further progress

[11/19/22, 7:14:21 PM] Dr. Rakesh Biswas sir: The discussion so far for those who joined later :

[9/16, 9:43 AM] Sanjana Kims 2019: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9301093/

[9/16, 9:44 AM] Sanjana Kims 2019: This was the previous paper on neurodegenerative disorders published led by @⁨Aashita KIMS PG⁩ ma'am

[9/16, 9:47 AM] Rakesh Biswas: Check out the CBBLE paper and the discussions included in it to get an idea

[9/16, 9:49 AM] Sanjana Kims 2019: Case 1: https://rishikakolotimedlog.blogspot.com/2022/09/51-year-old-male-with-swelling-and-loss.html?m=1

Case 2: http://munukutlasaimythili.blogspot.com/2022/09/a-case-of-50-year-old-man.html

Case 3: https://96sanjanapalakodeti.blogspot.com/2022/09/53f-with-uncontrolled-hand-movements.html

[9/16, 9:49 AM] Sanjana Kims 2019: These are the links to the cases we have of now. I've personally taken history for the last case

[9/16, 10:01 AM] Rakesh Biswas: What is needed is the discussion around them in the PaJR and CBBLE (2017) groups

[9/19, 7:18 AM] Sanjana Kims 2019: https://96sanjanapalakodeti.blogspot.com/2022/09/51m.html

[9/19, 7:19 AM] Sanjana Kims 2019: This is the blog link for the foot drop patient. I've included the discussion in the PaJR groups around it

[9/19, 8:51 AM] Sanjana Kims 2019: It's demyelinating sir. 

There are a few papers that show degeneration that progresses to demyelination in the end stage

[9/19, 8:51 AM] Sanjana Kims 2019: That would be very interesting. Please share those few papers and quote the relevant areas

[9/19, 8:51 AM] Sanjana Kims 2019: These are of specific case reports, sir:

A

nerve conduction study, performed on the day of admission,

revealed a reduction in sensory nerve action potential in the

sural nerve, indicative of axonal neuropathy (Table 1). After

admission to the hospital, the weakness rapidly worsened,

ascending from the lower to the upper extremities to render

the patient bedridden after 3 d. Urinary retention developed

at 17 d after the first symptom, and, at 21 d from onset,

ocular movements had become affected. A sural nerve bi-

opsy specimen, obtained at 22 d from onset, revealed axonal

degeneration, with a predominant loss of large myelinated

fibers (Fig. 1).

[9/19, 8:51 AM] Sanjana Kims 2019: "Ultrastructural and teased-fiber stud-

ies were carried out on the sural nerves of

nine patients with beriberi neuropathy.

Axonal degeneration was the most promi-

nent feature, and large myelinated fibers

were more affected than unmyelinated

ones. An unusual change with accumula-

tion of flattened sacs or tubuli was recog-

nized in the axoplasm of myelinated fibers

of untreated patients. Active regeneration

was extensive in patients receiving vita-

min B1. Segmental demyelination, remye-

lination, and early onion bulbs were

scarce in patients with a long and relaps-

ing course before treatment."

[9/19, 8:51 AM] Sanjana Kims 2019: Demyelinating injuries don't involve axons while axonal lesions can involve the entire breadth of the nerve including it's cover?

[9/19, 8:51 AM] Sanjana Kims 2019: This will be very valuable for your paper. Please try to establish that "neurodegenerative disorders" may not refer to the usual group of neurological diseases that we know (MND,  parkinsonism, familial neurodegenerative disorders etc ) but can also refer to any axonal injury causing wallerian degeneration and interestingly as in this case also leading to recovery. The usual neurodegenerative disorders that we currently know hardly ever recover so it would be important to make this distinction in your paper @918522964349

[9/19, 8:51 AM] Sanjana Kims 2019: @918522964349 Is the neuronal involvement in dry beri beri wallerian axonal degeneration or demyelination?

[9/19, 8:55 AM] Rakesh Biswas: So we have four active cases in discussion for this publication now? Or more?

[9/19, 8:55 AM] Sanjana Kims 2019: 4 sir.

[9/19, 8:58 AM] Rakesh Biswas: We'll finish collecting these by October end.

Meanwhile @⁨Aashita KIMS PG⁩ Can you pull out a few retrospectively?

[9/19, 9:20 AM] Aashita KIMS PG: Sure sir 

I will

[9/19, 9:23 AM] Rakesh Biswas: @918522964349 as this paper is also going to be a "conversational learning project around neurodegenerative disorders" please check out some papers around it here : https://www.researchgate.net/profile/Karen-Haydock and see what we can learn from them and reference

[9/20, 8:23 AM] Sai Charan Kulakarni Kims Med: “Neurodegeneration” is a commonly used word whose meaning is believed to be universally understood. Yet finding a precise definition for neurodegeneration is much more arduous than one might imagine. Often, neurodegeneration is only casually mentioned and scarcely discussed in major medical textbooks and is even incompletely defined in the most comprehensive dictionaries. Etymologically, the word is composed of the prefix “neuro-,” which designates nerve cells (i.e., neurons), and “degeneration,” which refers to, in the case of tissues or organs, a process of losing structure or function. Thus, in the strict sense of the word, neurodegeneration corresponds to any pathological condition primarily affecting neurons. In practice, neurodegenerative diseases represent a large group of neurological disorders with heterogeneous clinical and pathological expressions affecting specific subsets of neurons in specific functional anatomic systems; they arise for unknown reasons and progress in a relentless manner

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC151843/

[9/20, 8:23 AM] Sai Charan Kulakarni Kims Med: Going by above two reviews it appears as Neuronal degeneration ( either axon or cell body ) is the basic and early contributor for neurodegeneration ( group of diseases with similar patterns of involvement)..?

[9/20, 8:23 AM] Sai Charan Kulakarni Kims Med: Neuronal and axonal degeneration, as well as inflammation and demyelination, are integral components of the pathology of multiple sclerosis (MS). Neurodegeneration is seen in the earliest stages and throughout the course of the disease and contributes to irreversible physical and cognitive disability. Mitochondrial malfunction and energy failure, loss of trophic support by myelin, ion channel dysfunction, oxidative stress, and excitotoxicity have been identified as possible contributors to neurodegeneration

https://www.sciencedirect.com/topics/medicine-and-dentistry/nerve-cell-degeneration

[9/25, 6:14 AM] Sanjana Kims 2019: Update on the Athetosis patient:

The patient and her brother (with similar but slightly more severe symptoms) have visited our hospital. We have consulted with Dr. Annie Hasan, a geneticist from Kamineni LB Nagar and have sent both their blood samples for HD and SCA 1, 3, and 12 gene analysis. Based on the results, we will be counselling the patients.

[9/25, 6:15 AM] Sanjana Kims 2019: "...case of a 42-year-old man with a 5-year history of gait disturbance, dysarthria and cognitive impairment and familial antecedents of dementia and movement disorders. Initially the clinical picture suggested the diagnosis of a dominant SCA, but finally a diagnosis of HD was made based on the molecular evidence of abnormal 39 Cytosine-Adenine-Guanine (CAG) repeats in exon 1 of Huntingtin gene. The authors highlight the importance of suspecting HD in the aetiology of spinocerebellar ataxias"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3736277/ 

[9/26, 10:27 AM] Sanjana Kims 2019: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3646286/

Probably the most common HD-like syndrome in Caucasian populations is spinocerebellar ataxia 17 (SCA17, also known as HDL4). This accounts for 0.5%–1.8% of all HD-like syndromes, and its age of onset is between 19 and 48 years, rarely starting during childhood.2 Like HD, SCA17 is an autosomal dominant trinucleotide-repeat disorder, in which the mutated TBP gene encodes for the TATA-box binding protein, an important general transcription initiation factor. Intergenerational instability, especially during paternal transmission, and anticipation have been recognised.17 Cerebellar ataxia is the most common feature, but SCA17 may be very heterogeneous. Dystonia and chorea are the two most frequent movement disorders. When Parkinsonism is present, SCA17 may resemble multiple system atrophy, although without clear autonomic dysfunction, and the dopamine transporter single-photon emission computer tomography (DatScan, GE Healthcare) may be abnormal. Pyramidal signs occur in more than a third of cases. Overall, in most families, a true HD-like presentation is observed only in one or few affected members, although intrafamilial phenotypic homogeneity has been described.17

[9/27, 10:01 AM] Rakesh Biswas: Thanks for sharing this @⁨Vijayasimha Ajarananda⁩ 

We were reviewing Huntington's circuits for one of our current patients here http://96sanjanapalakodeti.blogspot.com/2022/09/47m-with-uncontrolled-hand-movements.html yesterday in the morning session and wonder if we can trial a neurostimulation on him here?

[9/27, 10:01 AM] Rakesh Biswas: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5039467/

[9/27, 3:23 PM] Rakesh Biswas: @918522964349 can you get in touch with the pediatric JR who just presented a very interesting patient with neurodegenerative disorder and get her and her case into the PaJR group for further discussion toward publication?

[11/19, 4:10 PM] Rakesh Biswas: We haven't prepared our first draft of the current AJND article yet

[11/19, 4:15 PM] Rakesh Biswas: On Fri, Sep 30, 2022, 7:45 AM editorial . <editorial@ajnd.us> wrote:

Dear Dr. Biswas,

Thanks for your response. We are looking forward to receiving your new manuscript in the near future.

Best regards,

Editorial Office

American Journal of Neurodegenerative Disease

www.ajnd.us

On Wednesday, September 28, 2022 at 07:01:34 PM GMT+8, Rakesh Biswas <rakesh7biswas@gmail.com> wrote:

Yes we are preparing our submission. 

Thanks a lot for extending the deadline. 

best, 

rb 

On Wed, Sep 28, 2022, 11:36 AM editorial . <editorial@ajnd.us> wrote:

Dear Dr. Biswas,

We are writing here to invite you to submit your next exciting works to American Journal of Neurodegenerative Disease (AJND) for consideration of publication:

http://www.ajnd.us/

AJND is an open access journal that is officially indexed in PubMed and Google Scholar, and fully archived in PubMed Central:

https://www.ncbi.nlm.nih.gov/pmc/journals/1989/

To show our appreciation for your participation and support, the open access publication fee will be waived if the manuscript is submitted before February 28, 2023. You will receive an invoice on publication fee from our automatic online system once your manuscript is accepted. Please send an email to invoice@e-century.org for publication fee waiver by attaching this invitation to serve as our tax purposes, and our Invoice Team will take action accordingly.

Also, if you are interested in joining our reviewer team, please visit the weblink below to participate:

https://e-century.us/reviewer/app/index.php

Thank you for your time to read this invitation. We are looking forward to receiving your positive responses in the near future.

Best regards,

Editorial Office

American Journal of Neurodegenerative Disease

www.ajnd.us

[11/19, 5:54 PM] Arefin Chandpur Chittagong Elective: Sir, please let us know what we can do next, or you can assign specific tasks to the respective persons, including me, to make further progress

[11/19/22, 7:19:55 PM] ‪+91 94933 40818‬: Is this study includes peripheral nerve lesions also..? A case of foot drop...?

[11/19/22, 7:22:55 PM] Dr. Rakesh Biswas sir: Neurodegenerative causes of foot drop such as the long distance patient who visited us and the foot drop remained unexplained?

[11/19/22, 7:26:47 PM] ‪+91 94933 40818‬: Our close differentials was Nerve sheet tumor and hansens sir. Can those be attributed to Neurodegenerative disease.

[11/19/22, 7:40:04 PM] Dr. Rakesh Biswas sir: But we ruled them out?

[11/19/22, 8:30:45 PM] ‪+91 94933 40818‬: Skin biopsy was done sir. Nerve biopsy was not done sir.

[11/21/22, 1:07:37 PM] ‪+91 94904 21632‬: How would we include the case i took sir

About a few metabolic disorders that present as neurodegenerative disorders

[11/21/22, 4:54:50 PM] Dr. Rakesh Biswas sir: Share the patient's case report here and let's discuss our learnings in that patient

[11/23/22, 5:40:48 AM] ‪+977 981‑7599973‬: (last line) Biosimilar was urodeoxycholic acid? (It's not matching the price)

I couldn't find on googling

[11/23/22, 9:14:43 AM] Dr. Rakesh Biswas sir: The reporter may have added a few extra zeroes from their side

[11/23/22, 9:15:05 AM] ‪+977 981‑7599973‬: 😀

[11/24/22, 9:01:53 PM] ‪+91 83747 89176‬: We have a patient were suspecting to have tremors after long term use of beta agonists for asthma. 

 

She is around 78 year old woman sir. She presented with breathlessness to us when we were at our opd. Her RR was around 24 cpm. 

It immediately relieved on giving nebulisations before shifting her to amc on our duty day. 

However that’s not only her history. She has been using inhalers for bronchial asthma since several years. She started even having involuntary movements of her head and also resting tremors of her upper limbs (Right > Left )  since 4 years. 

She even used medication for tremors and stopped. 

She however gave no other complaints. 

Her memory is intact sir 

MMSE - around 22 ( not educated)

Her gait is normal sir 

But there is reduced arm swing 

We noticed the sudden release of muscle spasm in her left upper limb sir - clasp knife rigidity 

The tone in other limbs were normal 

No postural instability was noted.

‎[11/24/22, 9:02:11 PM] ‪+91 83747 89176‬:  ‎<attached: 00000025-VIDEO-2022-11-24-21-02-11.mp4>

‎[11/24/22, 9:02:12 PM] ‪+91 83747 89176‬:  ‎<attached: 00000026-VIDEO-2022-11-24-21-02-12.mp4>

[11/24/22, 9:03:16 PM] ‪+91 83747 89176‬: There’s another patient with involuntary movements in our ward 

Another case of a woman around 70 years 

She also has been experiencing involuntary movements of her bilateral upper limbs at rest and also of her jaw since 6 months.

‎[11/24/22, 9:03:37 PM] ‪+91 83747 89176‬:  ‎<attached: 00000028-VIDEO-2022-11-24-21-03-37.mp4>

‎[11/24/22, 9:03:38 PM] ‪+91 83747 89176‬:  ‎<attached: 00000029-VIDEO-2022-11-24-21-03-38.mp4>

[12/25/22, 8:55:40 PM] Sanjana Palakodeti: ABSTRACT 

Neurodegenerative diseases are a group of conditions characterized by progressive and irreversible damage to the structure and function of the central nervous system.  This paper aims to examine the complexity of clinical management of neurodegenerative diseases focusing on the challenges posed by the gradual and progressive nature of the diseases. It highlights the importance of early diagnosis, as well as the need for comprehensive and individualized care plans. The paper further explores the various symptoms associated with neurodegenerative diseases and the difficulty of obtaining accurate diagnoses, especially in the early stages of the disease. It will also cover the importance of interdisciplinary collaboration, the need for personalized treatments, and the implications of emerging technologies for clinical practice. The findings of this paper will provide an important insight into the complexity of managing neurodegenerative diseases, which will aid in the development of strategies to improve patient care.

[12/25/22, 8:55:50 PM] Sanjana Palakodeti: The points/headings that I wanted to include under each case discussion:

1. The challenges faced while diagnosing it

2. Challenges faced while coming up with treatment plan

3. Challenges faced while communicating the nature of the disease with the patient/family

4. What we tried to do to support them (here PaJR and CBBLE groups come in)

[12/25/22, 9:02:02 PM] Dr. Rakesh Biswas sir: Also share this (with the background) in the PaJR volunteers group and invite those interested to co author this to also join this group. There are many new members there who may be able to help speed this publication since you shared it there last

[12/25/22, 9:15:51 PM] Arefin Sadat: @919121046928 sir my previous 2 blog case report was regarding Myelopathy and ALS.

In case these are helpful for this AJND paper, should I share the blog link here?

[12/25/22, 9:22:09 PM] Dr. Rakesh Biswas sir: Please do 

But more importantly we need to demonstrate the link between our learning outcomes in the PaJR cases (also with the daily informational continuity) and their illness outcomes. 

Are we positively able to influence their illness outcomes through our PaJR efforts? If not what are the barriers? If yes what is the evidence for that? 

We shall also ask @918522964349 and @918374789176 to present a version of the current paper in our Jan 25 conference. 

You can find Aashita presenting the pivot case in the video link below that finally got published in AJND here https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9301093/

[12/25/22, 9:28:12 PM] Arefin Sadat: https://dr-arefin.blogspot.com/2022/11/e-logs-medicine-hi-i-am-arefin-sadat.html

[12/25/22, 9:28:20 PM] Arefin Sadat: https://dr-arefin.blogspot.com/2022/11/59f-with-als.html

[12/26/22, 7:06:21 AM] ‪+91 83747 89176‬: @918522964349 could you come and meet me today after 1pm and show me what you are planning on presenting at the CME

[12/26/22, 7:11:13 AM] Sanjana Palakodeti: Sure ma'am. Where do I come?

[12/26/22, 7:12:53 AM] ‪+91 83747 89176‬: General medicine opd

[12/26/22, 7:13:00 AM] Sanjana Palakodeti: Ok ma'am

[12/26/22, 7:49:45 AM] ‪+91 83747 89176‬: Could you forward the case report links to me?

[12/26/22, 8:30:25 AM] Dr. Rakesh Biswas sir: @8801316197024 Can also share yours here

[12/26/22, 9:32:54 AM] Arefin Sadat: Case 01- Myelopathy 

https://dr-arefin.blogspot.com/2022/11/e-logs-medicine-hi-i-am-arefin-sadat.html

Case 02- ALS

https://dr-arefin.blogspot.com/2022/11/59f-with-als.html

[1/13/23, 7:49:10 PM] Dr. Rakesh Biswas sir: Can you share their PaJR group discussions and follow up? 

This current AJND write up that we are hoping to submit by the current deadline of February 28 focuses on our learning ecosystem that have been published in the past (UDHC, CBBLE) and particularly focuses on PaJR as an additional tool so that is what we are hoping to showcase with our PaJR followed up neurodegenerative cases. 

Potential titles for this paper :

Patient's journey record PaJR and other medical cognition tools in optimizing clinical complexity of Neurodegenerative disorders 

or 

Clinical complexity of neurodegenerative disorders and it's optimization through the "Patient's journey record" PaJR and other "medical cognition" tools

[1/13/23, 7:49:53 PM] Dr. Rakesh Biswas sir: Admins please share this group's link again in the PaJR volunteers group

[1/13/23, 7:57:53 PM] Arefin Sadat: okay sir

[1/13/23, 7:59:19 PM] Arefin Sadat: ‎You deleted this message.

[1/13/23, 8:04:22 PM] Arefin Sadat: Case 01- Myelopathy

The discussion so far-

[11/9/22, 11:28:44 PM] 39F myelopathy CB25 PaJR: ‎Messages and calls are end-to-end encrypted. No one outside of this chat, not even WhatsApp, can read or listen to them.

[11/9/22, 11:28:44 PM] ‎You created group “39F Neuropathic Problem”

[11/9/22, 11:32:14 PM] ‎You changed the subject to “39F Neuropathy PaJR”

[11/10/22, 9:42:53 PM] Arefin Sadat: https://dr-arefin.blogspot.com/2022/11/e-logs-medicine-hi-i-am-arefin-sadat.html

Here is the updated case report of this patient with all clinical images, reports, and a video of this walking movement.

[11/10/22, 9:52:15 PM] Dr. Rakesh Biswas sir: 👆@8801316197024 The patient identifiers are visible in the reports here. Please delete them asap

[11/10/22, 9:54:13 PM] Dr. Rakesh Biswas sir: 👆Also from here

[11/10/22, 9:54:40 PM] Arefin Sadat: Okay sir I am updating the report within a few minuts. I told her to crop the reports before sending me but I forgot to cross check it. My apology sir, I am really sorry for that

[11/10/22, 10:13:01 PM] Arefin Sadat: Done sir, I have updated the case report

[11/10/22, 10:13:10 PM] Arefin Sadat: @919121046928

[11/11/22, 8:25:37 AM] ‎Dr. Rakesh Biswas sir changed the subject to “39F myelopathy mum3 PaJR”

[11/11/22, 8:36:34 AM] Dr. Rakesh Biswas sir: Thanks. The diagnosis (neuroanatomical localization) is much clearer after reading your case report containing the Clinical findings and history. 

This neuroanatomical localization is an exciting development as far as the AJND full paper is concerned because we have till now covered extrapyramidal and peripheral neurons as cases in that paper and yours is the much needed pyramidal neurons that were awaited and in this case it could be a familial neurodegenerative disorder too. Any involvement of her generations above other than the suggestion that her child could be involved although again we need to examine and evaluate her child's speech before jumping to conclusions. 

What was the level at which the MRI was done? Given the clinical notes you have shared the pyramidal involvement appears to be higher than the cervical cord and hence a cranio cervical MRI would be necessary. 

Sharing this in the other groups so that we can gain more potential authors for this comissioned paper for AJND that we have already put off to accommodate the  USMLE exams which some of our potential authors were busy clearing and will now be hopefully back in action

[11/11/22, 8:43:44 AM] Dr. Rakesh Biswas sir: She lives in Mumbai right?

[11/11/22, 9:52:47 AM] Arefin Sadat: Okay, sir. I will try to know the level of MRI.

[11/11/22, 9:54:01 AM] Arefin Sadat: Sir, currently, she lives in Cooch Behar

[11/11/22, 9:55:13 AM] Dr. Rakesh Biswas sir: Oh since when?

[11/11/22, 10:03:44 AM] Arefin Sadat: Sir, according to the statement of my patient, she has been living in cooch bear since 2007

[11/11/22, 10:08:02 AM] Dr. Rakesh Biswas sir: OK. Where before that? 

Is it Cooch Bihar town or Mathabhanga?

[11/11/22, 10:09:23 AM] Arefin Sadat: Sir before 2007 she lived with her mother in Mathabhanga, but after marriage she is living in Coovh bihar since 2007 although her mother is living in Mathabhanga.

[11/11/22, 10:09:46 AM] Arefin Sadat: *cooch

[11/11/22, 10:11:55 AM] Dr. Rakesh Biswas sir: Alright so that may be another patient I had in mind

[11/11/22, 10:12:15 AM] ‎Dr. Rakesh Biswas sir changed the subject to “39F myelopathy CB25 PaJR”

[1/4/23, 5:39:43 AM] ‎‎‪+92 346 3730719‬ changed their phone number to a new number. ‎Tap to message or add the new number.

[1/13/23, 8:06:11 PM] Arefin Sadat: Case 02: ALS

The discussion so far-

[11/21/22, 7:30:40 PM] 59F with ALS: ‎Messages and calls are end-to-end encrypted. No one outside of this chat, not even WhatsApp, can read or listen to them.

[11/21/22, 7:30:40 PM] ‎You created group “59F with ALS”

[11/21/22, 7:31:28 PM] ‎‪+977 981‑7599973‬ joined using this group's invite link

[11/21/22, 7:34:16 PM] ‎Dr. Kshitij Sharma joined using this group's invite link

[11/21/22, 7:36:13 PM] ‎Dr. Dinesh Datta joined using this group's invite link

[11/21/22, 7:39:50 PM] ‎‪+91 81065 35865‬ joined using this group's invite link

[11/21/22, 7:56:59 PM] Patient 59F: Good Evening Doctors , my Self Bijoy Nag and i am Son of Shikha Nag

[11/21/22, 8:02:31 PM] ‎Nursing home joined using this group's invite link

[11/21/22, 8:12:49 PM] ‎‪+91 94933 40818‬ joined using this group's invite link

[11/21/22, 9:44:34 PM] Arefin Sadat: Greetings!

[11/21/22, 9:45:34 PM] Arefin Sadat: https://dr-arefin.blogspot.com/2022/11/59f-with-als.html

Here is the updated case report with deep tendon reflex videos of the patient: 59F with ALS

[11/21/22, 10:20:12 PM] Patient 59F: New symptom we found today , according to her it's very old , below video FYR

‎[11/21/22, 10:21:35 PM] Patient 59F: ‎video omitted

[11/21/22, 10:41:48 PM] Dr. Rakesh Biswas sir: Looks like brachial artery pulsations.

[11/22/22, 4:16:03 PM] Patient 59F: is there any medical center to take her for treatment, please suggest

[11/22/22, 4:20:16 PM] Dr. Rakesh Biswas sir: All medical centers will examine her and may offer some treatment but once they too clinically confirm the diagnosis of ALS there isn't much effective treatment medical science has been able to discover till now for this condition. 

Most centers can try to find solutions to support her current activities using what are currently called neurorehab tech. 

Please share her hourly activities here so that we can assess her current requirements

[11/22/22, 4:25:08 PM] Patient 59F: Sir , she dosen't have strength on her waist to Stand or walk, please advise if there is any treatment / surgery  which can help her

[11/22/22, 4:34:03 PM] Dr. Rakesh Biswas sir: As per the data you have shared till now through @8801316197024 this could be ALS in which case surgery is not available but for any paraplegic one of the neurorehab solutions available in US is "exoskeleton" and other devices. 

You can read more about them here https://link.springer.com/article/10.1007/s00415-022-10971-w

Some of our team members are researching on these technologies. @8801316197024 may be able to put you in touch with our team member and robotics expert, Abhishek Choudhury who is also there in our PaJR volunteers group

‎[11/23/22, 12:22:13 AM] Dr. Dinesh Datta: ‎image omitted

[11/23/22, 8:32:37 AM] ‪+977 981‑7599973‬: ‎This message was deleted.

[11/23/22, 8:33:02 AM] ‪+977 981‑7599973‬: For this case

- do they use well water for drinking or other household purpose?

- What filter they use for drinking water?

- please share her district and state name.

Well water is associated with sporadic ALS caused by probably fungal infection or inorganic toxins like selenium. Lead toxicity also one possibility due to sindur, so can we know if she is hindu?

What is his husband's age and how is his health?

[11/23/22, 8:33:37 AM] Dr. Rakesh Biswas sir: Share all the references too

‎[11/23/22, 8:34:22 AM] ‪+977 981‑7599973‬: ‎image omitted

[11/23/22, 8:34:25 AM] Dr. Rakesh Biswas sir: 👆@919836213355 Please see if you can answer @9779817599973 's questions

‎[11/23/22, 8:34:56 AM] ‪+977 981‑7599973‬: ‎image omitted

[11/23/22, 8:47:28 AM] Dr. Rakesh Biswas sir: Share clickable links too

[11/23/22, 8:49:03 AM] ‪+977 981‑7599973‬: https://pubmed.ncbi.nlm.nih.gov/16909025/

[11/24/22, 12:11:36 PM] ‪+977 981‑7599973‬: @919836213355 

The importance of questions is, if she consumes water from well, can stop that. If it's in a district where water toxicity with metals are common then we may look into research to find ALS scenario there as sometimes toxicity treatment may help symptoms. If filter at home then better if family members consume water from that and avoid from well if we find possible connection.

[11/24/22, 12:12:25 PM] ‪+977 981‑7599973‬: So whenever possible, you may find answers from patient or their family.

[11/24/22, 2:34:26 PM] Patient 59F: we have RO machine , from there we are Drinking water

[11/24/22, 7:04:07 PM] Dr. Rakesh Biswas sir: Does she use a wheel chair?

[11/24/22, 7:17:47 PM] Patient 59F: No sir

[11/24/22, 7:40:44 PM] Dr. Rakesh Biswas sir: Is she able to walk nowadays?

[11/24/22, 7:45:23 PM] Patient 59F: No she is not able to walk, she need support to walk, once we hold her hand with that she is walking with very slow step

[11/24/22, 7:48:57 PM] Dr. Rakesh Biswas sir: Alright that means she can walk with support. 

How long does she walk daily? 

Is she able to walk from her bed to the bathroom and able to look after herself?

[11/25/22, 10:52:07 PM] ‪+977 981‑7599973‬: Any ayurvedic medication use by the patient now, recently/ recent past?

Please list all if used with duration used for.

They sometimes cause lead toxicity.

[1/13/23, 9:08:01 PM] Dr. Rakesh Biswas sir: Thanks @8801316197024 . Both of them had a good start but we appeared to have left them incomplete. 

Any possibility of rekindling their daily follow up to see if our inputs can have any meaningful impact on their lives?

[1/13/23, 11:21:28 PM] Arefin Sadat: okay sir, gonna knock them and ask about their current conditions

[1/14/23, 7:59:42 AM] Dr. Rakesh Biswas sir: @918374789176 He's a progressive neurodegenerative disorder ADCA who is being followed up by us since 2005 and we have also met him in 2013 as well as contacted him in 2022 and finally made his case report here 👇

https://drsaranyaroshni.blogspot.com/2022/02/a-middle-aged-man-with-progressive.html?m=1 and hope to follow him up well daily also for the AJND PaJR paper

[1/14/23, 8:00:07 AM] Dr. Rakesh Biswas sir: https://chat.whatsapp.com/JWLzp0rhJERAfMjzvhbrGn

[1/14/23, 8:03:16 AM] Dr. Rakesh Biswas sir: Please ask them to share their daily energy input (food plates) and outputs (hourly activities)

[1/29/23, 10:27:45 PM] ‪+91 83747 89176‬: @918522964349 please forward the messages exchanged or the discussion that took place when the huntingtons cases got admitted in medicine

[1/29/23, 10:27:52 PM] ‪+91 83747 89176‬: Let’s start working on the paper

[1/29/23, 10:32:13 PM] Dr. Rakesh Biswas sir: Current title : Optimizing clinical complexity in neurodegenerative disorders using medical cognition tools"

Abstract (current preliminary draft) :

We illustrate conversational learning through our udhc global and local CBBLE groups around neurodegenerative disorder patients and topics as well as insights from their informational continuity through PaJR groups 

We begin with a few Huntington's chorea patients family who approached us through our PaJR groups and finally traveled 2000 kms to meet us in our hospital where focused genomic studies were done that came positive for Huntington's following which our PaJR team tried to get in touch with an ongoing international clinical drug  trial to see if they could register our patients. 

We further share our workflow around multiple neurodegenerative disorder patients to demonstrate how PaJR driven informational continuity has the potential to not just improve health professionals learning outcomes but also real patient outcomes  

‎[1/29/23, 10:35:31 PM] Sanjana Palakodeti: WhatsApp Chat with 53F Huntington JP7 PaJR.txt ‎<attached: 00000058-WhatsApp Chat with 53F Huntington JP7 PaJR.txt>

[1/29/23, 10:36:52 PM] ‪+91 83747 89176‬: More discussions round the patient?

[1/29/23, 10:39:40 PM] Dr. Rakesh Biswas sir: Yes there are many more

[1/29/23, 10:40:12 PM] Sanjana Palakodeti: 👆@918522964349 Add all the conversations around this patient onto your case report as they keep building. 

Also add this similar case below 👇

"...case of a 42-year-old man with a 5-year history of gait disturbance, dysarthria and cognitive impairment and familial antecedents of dementia and movement disorders. Initially the clinical picture suggested the diagnosis of a dominant SCA, but finally a diagnosis of HD was made based on the molecular evidence of abnormal 39 Cytosine-Adenine-Guanine (CAG) repeats in exon 1 of Huntingtin gene. The authors highlight the importance of suspecting HD in the aetiology of spinocerebellar ataxias"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3736277/ 

[1/29/23, 10:40:13 PM] Sanjana Palakodeti: @917702047534 What anatomical areas do you think are currently involved in the 47M patient under discussion based on the physiological parameters you have with you now as a result of the detailed examination findings shared above

[1/29/23, 10:40:13 PM] Sanjana Palakodeti: Sir, we have specific nuclii in the badal ganglia, the caudate. The degeneration of this nucleus will cause huntington.. Also the levels of GABA decreases. 

Since GABA is an inhibitory nuerotransmitter, the excitatory impulse overrules and person has chorea and involuntary movements in eye and speech slurring

[1/29/23, 10:40:16 PM] Sanjana Palakodeti: Sir, after reviewing the list of physiological parameters that are currently present, I have come to the following observations:-

1.)Due to presence of tremors, the spinomotor system can be involved

2.)The patient has complained about the inability of retention of urine for long periods of time, thereby indicating slight disturbance in the centre responsible for micturation i.e. the Pontine micturition center(PMC), which is located in the medial dorsal pons. 

3.) Cerebellar speech is observed... Due to the slurring although there is no slowness of speech observed, which indicates that the extrapyramidal tracts are not involved. 

4.)There is also unsteadiness in his gait that has been observed, which is accompanied with swaying from side to side occasionally and his inability to negotiate narrow pathways, which further proves that the cerebellum is being involved.

[1/29/23, 10:40:16 PM] Sanjana Palakodeti: So, based on his gait (which I would describe as Trunkal Ataxia as it is quite staggered), I can say that the archicerebellum involvement is there, but I am guess there is more involvement of the neocerebellum seen due to the following observations:-

1.) The patient does seem to have Dysmetria because he seemed to have difficulty in performing the finger nose test

2.) Dysarthria, due to his slurred speech.

[1/29/23, 10:40:17 PM] Sanjana Palakodeti: Patient also mentions difficultly in getting up from chair and out of bed, so truncal ataxia is very probable

[1/29/23, 10:40:17 PM] Sanjana Palakodeti: Very good inputs everyone 👏 @918522964349 These will all go to illustrate the conversational learning in the AJND paper 👍

[1/29/23, 10:40:18 PM] Sanjana Palakodeti: 👆Very similar to our current patient of Huntington's (without the classical onset) that our student has case reported here http://96sanjanapalakodeti.blogspot.com/2022/09/47m-with-uncontrolled-hand-movements.html

Maybe this presentation of Huntington's is underreported and we need to also formally report this in BMJ Case reports

[1/29/23, 10:40:18 PM] Sanjana Palakodeti: So now if you check out the other case report of Huntington's similar to our current patient you may realize that Huntington's may involve other locations in the brain too. @919133494201 

@917702047534 What is the tone and reflexes that you examined in this patient? Can a patient having ataxia walk tandem as we demonstrated outside Dhanwantari yesterday? @918522964349 @919133494201 We need the deidentified videos of this patient's reflexes as well as gait, including tandem along with the dysmetria. Check out normal and abnormal CNS examination videos in YouTube and you will know how to take yours and upload it in a similar manner and then share the links here as well as in the 47M case report

[1/29/23, 10:40:18 PM] Sanjana Palakodeti: Yes sir👍🏻

[1/29/23, 10:40:19 PM] Sanjana Palakodeti: Sir, from what me and @918522964349 have examined so far yesterday, we have found that the muscle tone in both the upper and lower limbs is normal. We have also examined the jaw reflex as well as the knee jerk reflex. The knee jerk reflex seemed to be normal although we both noted that it was slightly exaggerated. So it has been noted to retest that.  There is no jaw reflex that was noticed so we thought of retesting that too.

[1/29/23, 10:40:19 PM] Sanjana Palakodeti: https://youtu.be/JSyLnt3rLxs

Sir, based on this video I don't think that a patient having ataxia can walk tandem to as was demonstrated outside Dhanwantari yesterday

[1/29/23, 10:40:19 PM] Sanjana Palakodeti: So what is our patient's gait like? How do we classify it? Can we call it spastic gait? Check that out too and would be great if someone can share the gait video of our patient

[1/29/23, 10:40:20 PM] Sanjana Palakodeti: https://stanfordmedicine25.stanford.edu/the25/gait.html

[1/29/23, 10:40:20 PM] Sanjana Palakodeti: We need some PaJR volunteers to classify all the gait videos that we have from the 1000 case reports in our dashboard

[1/29/23, 10:40:21 PM] Sanjana Palakodeti: Sir for rewatching the patient video which was posted here, I don't think we can call this spastic gait cuz there is no "scissoring" that has been observed so far... The key pointers that I have noticed so far after being with this patient are:-

1) he seems to have difficulty when he is asked to walk in a straight line. (Can't seem to cross his legs) 

2) his fingers sometimes flex and extend while he is walking

3) The patient did also mention his toes also contracting at times when he is walking although that has not been observed in real life nor on video so far

[1/29/23, 10:40:21 PM] Sanjana Palakodeti: 4) also it is staggered

‎[1/29/23, 10:40:21 PM] Sanjana Palakodeti:  ‎<attached: 00000078-VIDEO-2023-01-29-22-40-21.mp4>

[1/29/23, 10:41:14 PM] Sanjana Palakodeti: Examined the patient today just now.

He doesn't have any cerebellar signs and his finger nose and heel shin tests are very good. 

So @918522964349 for your AJND paper can you explore how an athetosis like presentation alone due to Huntington can mimic spino cerebellar ataxia (that made us look for those genes too that we may have otherwise avoided)?

[1/29/23, 10:41:15 PM] Sanjana Palakodeti: Thanks for sharing this @919845031486 

We were reviewing Huntington's circuits for one of our current patients here http://96sanjanapalakodeti.blogspot.com/2022/09/47m-with-uncontrolled-hand-movements.html yesterday in the morning session and wonder if we can trial a neurostimulation on him here?

[1/29/23, 10:41:15 PM] Sanjana Palakodeti: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5039467/

[1/29/23, 10:41:15 PM] Sanjana Palakodeti: @918522964349 can you get in touch with the pediatric JR who just presented a very interesting patient with neurodegenerative disorder and get her and her case into the PaJR group for further discussion toward publication?

‎[1/29/23, 10:41:16 PM] Sanjana Palakodeti:  ‎image omitted

[1/29/23, 10:41:45 PM] Sanjana Palakodeti: Aei oshudh ta niye bortomane ekta clinical trial cholche 👇

https://clinicaltrials.gov/ct2/show/NCT05358717

[1/29/23, 10:41:45 PM] Sanjana Palakodeti: @918522964349 @919330240199 @9779817599973 @923463730719 @8801733506870 

Can you check with these trialists if they can take two of our patients into their ongoing clinical trial for their Huntington's disease?

[1/29/23, 10:42:17 PM] Dr. Rakesh Biswas sir: 👍

[1/30/23, 10:32:00 AM] ‪+91 83747 89176‬: Sir did this patient have any ataxia ? 

Or he had only athetosis in the presentation alone

[1/30/23, 10:49:30 AM] Dr. Rakesh Biswas sir: No ataxia. Only athetosis. 

Check out the prior shared similar case report links

[2/1/23, 8:39:26 AM] Dr. Rakesh Biswas sir: This work : https://content.iospress.com/articles/journal-of-alzheimers-disease/jad220535 reiterates our hypothesis that we voiced in the morning @919493340818 and afternoon session @918374789176 about vasculopathy leading to neurodegenerative disorder? 

We are yet to get further details on Charan's patient's scholastic performance and her brain MRI atrophy as well as yet to see any activity in the PaJR groups of these two patients that we thought would be regularly updated by our PGs by calling them up and then transcribing the data in their PaJR groups. I guess we'll need to start paying for such services and can't hope to run it in this voluntary manner?

[2/1/23, 8:56:01 AM] Dr. Rakesh Biswas sir: @918374789176 We can cite this paper in our February 2023 deadlined neurodegenerative PaJR focused paper also mentioning the conference as a culmination and assimilation wave of our PaJR activities

[2/1/23, 10:49:45 AM] ‪+91 83747 89176‬: Done sir

Will go through this paper 👍

[2/2/23, 1:59:23 PM] ‪+91 93913 80143‬: ‎‪+91 83747 89176‬ added ‪+91 93913 80143‬

[2/5/23, 4:16:56 PM] Dr. Rakesh Biswas sir: 👆Our neurodegenerative ADCA PaJR patient :

Regular exercise and assisted walking using a self designed walkway with railings and regular social interaction makes his life worthwhile inspite of severe disability 

https://youtu.be/Yk8f07lfclI

[3/1/23, 10:47:49 PM] Dr. Rakesh Biswas sir: https://chat.whatsapp.com/FYL2BZ1zT3PLDgr7WvP2hk

[3/1/23, 10:48:39 PM] Dr. Rakesh Biswas sir: Date of admission -28/2/23

AMC BED 4 

S

Patient came with the complaints of 

-Slurring of speech since yesterday morning

-Generalised body pains since 1day

-Difficulty in walking since 1 day

O 

Pt is conscious, coherent, cooperative

Afebrile on touch

Bp -130/70 mm hg

PR-82 bpm

Temp-96.4 f

RR- 16 cpm

SPO2- 96% on RA

Grbs - 154  mg/dl

Systemic examination-

CVS-s1, s2 heard , no murmurs

RS-BAE , normal vesicular breath sounds

P/A- soft , nontender

CNS- 

Patient is oriented to time , place , person

Speech- STACATO / SCANNING  SPEECH

Memory - recent , past - intact

                 Remote -lost

Appearance - well kept

Level of consciousness-

GCS-E4V5M6

Cranial nerve examination- normal 

Attitude - supine with knees flexed

Tone-

 upper  limb - left and right -normal

Lower limb -left and right - normal

Power-

upper  limb - left and right —4/5

Lower limb -left and right - 4/5

Reflexes- right     Left

Biceps-     2         2

Triceps-    2          2

Supinator-  2         2

Knee-         2          2

Ankle-        1            1

Sensory examination-

Fine touch -normal

crude touch -normal

Rombergs- negative

Cerebellum

Nystagmus -absent

Finger nose test- can’t be assessed

Heel knee test -can’t be assessed

A 

RECURRENT CVA WITH ACUTE ISCHEMIC STROKE IN RIGHT CEREBELLAR HEMISPHERE  WITH HYPERTENSION AND TYPE II DM SINCE 10 YEARS 

P

Inj.optineuron in 500ml NS IV /OD

-Tab . Ecospirin 150mg po/OD

    At 8am

-Tab . Clopidogrel 75 mg po/OD

    At 2pm

-Tab . Atorvastatin 20mg po/OD

    At 8pm

-Inj . Mixtard insulin s/c 

   18U———x——— 12U

-Inj . 2 amp KCL in 1 unit NS over 5 hrs

-GRBS  monitoring -7 point profile

[3/1/23, 10:48:39 PM] Dr. Rakesh Biswas sir: Since when has she lost her remote memory?

[3/1/23, 10:48:40 PM] Dr. Rakesh Biswas sir: Here's an interesting paper on remote memory: 👇

https://royalsocietypublishing.org/doi/10.1098/rstb.2017.0029

[3/1/23, 10:48:40 PM] Dr. Rakesh Biswas sir: Please share her clinical and radiological images in the case report as well as here asap

[3/1/23, 10:48:41 PM] Dr. Rakesh Biswas sir: https://journals.sagepub.com/doi/10.1111/j.1747-4949.2011.00666.x

[3/1/23, 10:48:41 PM] Dr. Rakesh Biswas sir: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8570373/

[3/2/23, 1:14:05 PM] ‪+91 83747 89176‬: Yes sir 

Hypertension diabetes are some of the major risk factors for NDD

Along with patients who were found to have more leisure activity 

Yes sir 

We need to figure out if it’s a post stroke Dementia or is it a vascular dementia fitting into the vascog criteria 

We need to take a proper history 

We need to see if the cognitive decline started after the event 

And if there’s any associated urinary incontinence, gait abnormality ( like in our patient), personality changes

[3/2/23, 1:14:35 PM] ‪+91 83747 89176‬: Lobar function test

[3/2/23, 1:14:55 PM] ‪+91 83747 89176‬: Sir 

No proper details regarding her day to day activities 

Or any presence of psychiatric history or details about any mood changes lately 

No MMSE mentioned as well sir

And lobar function tests

[3/2/23, 1:14:56 PM] ‪+91 83747 89176‬: Speech they haven’t mentioned regarding comprehension, repetition

‎[3/2/23, 1:14:57 PM] ‪+91 83747 89176‬:  ‎image omitted

[3/2/23, 2:55:04 PM] Dr. Rakesh Biswas sir: https://chat.whatsapp.com/C7JMYisMuLVH3JjTMM5EJ8

[3/2/23, 2:55:19 PM] Dr. Rakesh Biswas sir: 👆This is another patient

[3/2/23, 2:56:40 PM] Dr. Rakesh Biswas sir: This is the case of 75 year old male who is a resident of Govindapuram , came with complaints of insomnia , not oriented to time , place and person, forgets own identity , self crying since 1month . 

Patient was apparently asymptomatic 7 years back then he had a prick to his left foot , and attenders observed an ulcer which wasn’t healing associated with fever. He was taken to an govt hospital where they told that the left leg is infected and amputation should be done , and was diagnosed with diabetes type -I I , and was on OHA since then. 

Since 1 month attenders have observed patient going out of the house but not coming back , sleeping on the road footpaths, forgetting the route to home. increased crying , talking to self , irrelevant smiling, decreased appetite , increased anger burst outs . Attenders observed repeatedly asking about the same thing which was done prior an hour. Eg : he received his pension amount , after 10 mins he asks where is my pension amount ? During nights attenders observed that he counts coins/ money, folds paper or plays with toys . History of fall from bed and sustain injuries over face . 

History of hearing loss bilateral since 30 years, 

No history of head injury 

History of diabetes since 10 years 

Non hypertensive

[3/2/23, 2:59:58 PM] Dr. Rakesh Biswas sir: @918374789176 Can you guide @918367363668 to focus on developing their daily PaJR driven care and help you in writing the paper around these current patients? Also @918522964349 @8801316197024 if they can visit the wards and these patients once their exams are over? Another Elective student will be in our campus here from 20-30 March to help write this paper 

Please make me admin here

[3/6/23, 9:40:52 AM] Dr. Rakesh Biswas sir: ‎Dr. Rakesh Biswas sir changed this group's icon

[3/6/23, 9:40:02 AM] ‪+91 88953 49144‬: ‎Dr. Rakesh Biswas sir added ‪+91 88953 49144‬

[3/6/23, 9:41:16 AM] Dr. Rakesh Biswas sir: ‎Dr. Rakesh Biswas sir changed the group description

[3/6/23, 9:44:37 AM] ‪+91 90590 22329‬: ‎‪+91 90590 22329‬ joined using this group's invite link

[3/6/23, 9:49:51 AM] ‪+91 94921 06069‬: ‎‪+91 94921 06069‬ joined using this group's invite link

[3/6/23, 9:52:12 AM] Dr. Rakesh Biswas sir: Involuntary movements in CKD include restless legs syndrome (RLS), myoclonus, asterixis, dystonia, chorea, tremor, and Parkinsonism.

Myoclonus is a hyperkinetic movement disorder characterized by fast (< 50 ms duration) jerky movements. It can be focal or generalized.

One common form of myoclonus in CKD is *poly-mini- myoclonus* . This is presented as low amplitude jerky movements of the fingers, often bilateral and can be confused with distal tremor. It is best seen in the stretched hands. Poly-mini-myoclonus usually disappears with improvement of kidney function.

Clonazepam is the drug of choice for the treatment of stimulus sensitive myoclonus in CKD. In severe cases, it can be given intravenously. Myoclonus of CKD patients improves dramatically with dialysis.

https://www.sciencedirect.com/science/article/abs/pii/S1052305720308260

‎[3/6/23, 9:52:12 AM] Dr. Rakesh Biswas sir:  ‎image omitted

[3/6/23, 9:52:13 AM] Dr. Rakesh Biswas sir: Can this brain damage due to metabolic causes lead to permanent neurodegenerative disorders?

@918374789176 I feel through our current paper we have this unique opportunity to subtly influence the change of this word neurodegenerative and make it broader to include all kinds of brain damage that is eventually followed by permanent neuronal degeneration and loss. Let's review the literature around this. 

Same was tried in Hurst's text book of cardiology with dilated cardiomyopathy which was initially specifically used for idiopathic dilated cardiomyopathy but Hurst broadened the usage of the term by including all cases of LV dilatation and then grouping them into ischemic, valvular etc

[3/6/23, 9:52:13 AM] Dr. Rakesh Biswas sir: Also associations between CKD and minipoly myoclonus

‎[3/6/23, 9:52:17 AM] Dr. Rakesh Biswas sir:  ‎<attached: 00000119-VIDEO-2023-03-06-09-52-17.mp4>

[3/6/23, 9:53:17 AM] Dr. Rakesh Biswas sir: 👆https://chat.whatsapp.com/G6iFuSHCclLHzG02mOTjv3

[3/6/23, 10:07:22 AM] Dr. Rakesh Biswas sir: Sorry sir am not the part of treating team.. as it was my thesis case I want to put my findings here Wednesday resident rounds with @918367363668 @918317669334  @919505766290 .

‎[3/6/23, 10:07:22 AM] Dr. Rakesh Biswas sir:  ‎<attached: 00000122-VIDEO-2023-03-06-10-07-22.mp4>

[3/6/23, 10:07:23 AM] Dr. Rakesh Biswas sir: 👆This appears better than on admission? The miracle of heavy dose steroids?

[3/6/23, 10:07:28 AM] Dr. Rakesh Biswas sir: Maximalist treatment?!! @919493340818

‎[3/6/23, 10:07:28 AM] Dr. Rakesh Biswas sir:  ‎image omitted

[3/6/23, 10:14:34 AM] Dr. Rakesh Biswas sir: https://chat.whatsapp.com/Fj3HyaUCHxw9x3FLGPa0d7

[3/6/23, 11:34:29 AM] ‪+91 83890 80035‬: ‎‪+91 83890 80035‬ joined using this group's invite link

[3/6/23, 12:05:03 PM] ‪+91 81061 77663‬: ‎‪+91 81061 77663‬ joined using this group's invite link

[3/6/23, 12:29:07 PM] ‪+91 79972 16160‬: ‎‪+91 79972 16160‬ joined using this group's invite link

[3/7/23, 10:12:40 PM] Dr. Rakesh Biswas sir: Current project on clinical complexity in neurodegenerative disorder and utility of user driven healthcare tools (PaJR sample group) 👇

https://chat.whatsapp.com/JWLzp0rhJERAfMjzvhbrGn

[3/7/23, 10:20:57 PM] Dr. Rakesh Biswas sir: He's a progressive neurodegenerative disorder ADCA who is being followed up by us since 2005 and we have also met him in 2013 as well as contacted him in 2022 and finally made his case report here 👇

https://drsaranyaroshni.blogspot.com/2022/02/a-middle-aged-man-with-progressive.html?m=1 and hope to follow him up well daily also for the AJND PaJR paper

[3/7/23, 10:23:41 PM] Dr. Rakesh Biswas sir: 👆Our neurodegenerative ADCA PaJR patient :

Regular exercise and assisted walking using a self designed walkway with railings and regular social interaction makes his life worthwhile inspite of severe disability 

https://youtu.be/Yk8f07lfclI

[3/7/23, 10:24:50 PM] Dr. Rakesh Biswas sir: Current title : Optimizing clinical complexity in neurodegenerative disorders using medical cognition tools"

Abstract (current preliminary draft) :

We illustrate conversational learning through our udhc global and local CBBLE groups around neurodegenerative disorder patients and topics as well as insights from their informational continuity through PaJR groups 

We begin with a few Huntington's chorea patients family who approached us through our PaJR groups and finally traveled 2000 kms to meet us in our hospital where focused genomic studies were done that came positive for Huntington's following which our PaJR team tried to get in touch with an ongoing international clinical drug  trial to see if they could register our patients. 

We further share our workflow around multiple neurodegenerative disorder patients to demonstrate how PaJR driven informational continuity has the potential to not just improve health professionals learning outcomes but also real patient outcomes  

[3/8/23, 10:32:41 PM] Dr. Rakesh Biswas sir: Project neurodegenerative disorder :

A 6 year old device with intermittent blackouts and inability to communicate 

Extending the analogy of our consciousness inhabiting the body akin to how we inhabit our  mobile phones by looking at what happens as an aging mobile phone develops a neurodegenerative disorder beginning with intermittent Broca's aphasia suggestive of a recurrent middle cerebral artery territory TIA. 

The PaJR group records the daily workflow of one mobile phone avatar with the patient advocate regularly updating it's daily hourly activities (energy expenditure) along with its daily energy intake (charging). The main thrust on solving this phone's problem is around recording the hourly times it has it's issues and the current manner in which it recovers. 

Daily hourly routine and interruptions :

9:00 AM Experienced inability to talk type for quite a few minutes. Even the keyboard wouldn't shut down and everything was hanged. 

Later could manage to check whatsapp messages and emails although couldn't type but could even select and respond by using emojis into the messages. Only the keyboard wouldn't spring into the screen when I needed to type either on the email or the whatsapp interface. 

Kept on cleaning the hard drive of APK, Memory, Cached files, uninstalled residuals and advertising junk. Knew that resetting by switching it off and starting again would work as it had before (wonder what's the neurodegenerative patient analogy here) but didn't want to as I had also managed to get it back without that earlier with (what I imagined was ) just a simple cleaning intervention as detailed above. 

Went for a walk and during the walk checked a few messages and suddenly realized I was able to respond to them! 

At 4PM realized there were quite a few messages I hadn't responded to and started looking them up. Troubled by transient key board hangings intermittently and screen blackouts (aka neurological syncopes) occasionally. Kept cleaning intermittently. 

8/3/2023

3:00 PM 

Transient Brocas TIAs thrice since morning 

4:14 PM transient blackout with an in general slowness 

Compulsively cleaned up the data thrice as a probable remedy 

https://chat.whatsapp.com/K1RUhmKhVql4DOtZpwBRSF

[3/13/23, 8:15:59 AM] Dr. Rakesh Biswas sir: Revised title :

Optimizing clinical complexity in neurodegenerative disorders using medical cognition tools and a digital neurodegenerative symptoms model emanating through one such tool

[3/13/23, 3:46:24 PM] Arefin Sadat: We have already extended our submission date twice. Hopefully, we will successfully end up with our quality work on the current AJND paper.

We have 6 active cases on neurodegenerative diseases here.

Case 1: https://rishikakolotimedlog.blogspot.com/2022/09/51-year-old-male-with-swelling-and-loss.html?m=1

Case 2: http://munukutlasaimythili.blogspot.com/2022/09/a-case-of-50-year-old-man.html

Case 3: https://96sanjanapalakodeti.blogspot.com/2022/09/53f-with-uncontrolled-hand-movements.html

Case 4: https://96sanjanapalakodeti.blogspot.com/2022/09/51m.html

Case 5: https://dr-arefin.blogspot.com/2022/11/e-logs-medicine-hi-i-am-arefin-sadat.html

Case 6: https://dr-arefin.blogspot.com/2022/11/59f-with-als.html

Can we have an active conversation on how should we progress to complete our first draft?

[3/13/23, 4:00:46 PM] Dr. Rakesh Biswas sir: Well initiated @8801316197024 

Take this discussion also to the PaJR volunteers group where there are more potential discussants and authors along with a new patient admitted yesterday

[3/13/23, 4:01:56 PM] Arefin Sadat: okay sir

[3/13/23, 4:02:00 PM] Dr. Rakesh Biswas sir: https://chat.whatsapp.com/C8NgrleGZwrKAQ8QWwwbP8

[3/13/23, 4:02:38 PM] Dr. Rakesh Biswas sir: @918367363668 Share his MRI images and the cerebral vasculopathy neurodegenerative disorder connection

[3/13/23, 4:44:03 PM] ‪+91 87774 68173‬: ‎‪+91 87774 68173‬ joined using this group's invite link

[3/13/23, 4:53:45 PM] ‪+91 97334 01885‬: ‎‪+91 97334 01885‬ joined using this group's invite link

[3/13/23, 4:43:45 PM] Dr. Rakesh Biswas sir: @8801316197024 Can you prepare a blog post on whatever has been shared in this group since it was started?

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[3/13/23, 6:42:15 PM] Arefin Sadat: Sure sir, will prepare a blog soon

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[3/15/23, 9:01:15 AM] Dr. Rakesh Biswas sir: Project : Neurodegenerative disorders and ischemic connections 

Current patient participant context 👇

https://chat.whatsapp.com/C8NgrleGZwrKAQ8QWwwbP8

[3/14, 9:49 PM] Deepika 2021 Kims PG: Combining these three studies together, it is clear that small (punctate) white matter lesions are extremely common, they are found in roughly half of the otherwise healthy population in their 40's, and WML increase with age. In addition, as people age, they not only get more white matter lesions, but the WML start to merge together into bigger patches (confluent white matter lesions). People who have vascular risk factors (such as diabetes, smoking, hypertension), have more of these lesions.

Major causes of periventricular white matter (PWM) lesions include normal changes from aging (then they are called UBO's, for "unidentified bright objects), small strokes, and disorders related to multiple sclerosis (MS). PWM are also correlated with vitamin B6 (pyridoxine) deficiency. The phrase "normal changes from aging" is really a synonym for "we don't know".

 "wear and tear" phenomenon. You get older, and there is more water under the bridge. More fluctuations in blood pressure, more chance for small blood vessels to close, more chance of head injury, more chance for little emboli.

 There is a related disorder called "superficial siderosis" due to cerebral bleeds as well as cerebral micro bleeds briefly discussed above.

 Clinical studies of PWM also show association with diabetes, but not consistently with atherosclerosis

PRES (reversible posterior leukoencephalopathy syndrome), can cause similar white matter lesions, but this condition is acute, and has some possibility of reversal.

META ANALYSIS of 22 studies show-

White matter hyperintensities were associated with an increased risk of stroke (hazard ratio 3.3, 95% confidence interval 2.6 to 4.4), dementia (1.9, 1.3 to 2.8), and death (2.0, 1.6 to 2.7)."

White matter lesions correlate strongly with reduced gait speed as well as reduced mental ability

After adjusting for age, gender, educational level, measures of depression, and brain atrophy and infarcts, subjects with severe periventricular white matter lesions experienced cognitive decline nearly three times as fast" as the average." This is not surprising as persons with severe PVM have experienced a lot of brain damage.

[3/14, 9:50 PM] Deepika 2021 Kims PG: https://dizziness-and-balance.com/disorders/central/pvm.htm

[3/15, 8:25 AM] Rakesh Biswas: Valuable inputs for the AJND paper that also explores the grey zone between small vessel neuronal ischemia and neurodegenerative disorders. 👍