Mother possible MND no muscle loss

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Sk971

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Mother possible MND no muscle loss

Hello All and apologies for a long winded post.

My Mother 78 (now 80) at the time had sustained illness and hospitalisation following a stroke and fractured hip from September 2019 for approx 10 weeks and variously had
sepsis , DVT , ocular hypotension, delirium , grade 3 bedsores , and further fall and concussion following her hip replacement.
the hospital also increased her dose of pregablin lyrica (peripheral neuropathy) to a very high 750mg
At the end of her stay she was diagnosed as having brisk reflexes and an EMG was performed showing irregularities and possible MND
We were overwhelmed at the time and were desperate to get her out of hospital as we felt her physical and mental state were declining .
Her Physio only really got underway in January 2020 at which point she had significant muscle wastage in her left quad and calf muscle as well as drop foot . She had over a period of several months regained her muscle tone and the drop foot has recovered .
We had to cancel further EMG tests and appointments due TO COVID and had a telephone appointment with a neurologist who expressed surprise that her physical condition had improved Now 15 months later from the initial possible diagnosis we have been contacted again regarding an EMG .her walking is still hindered by hip pain and her physio recovery has been very slow however her muscle mass , general strength and balance has noticeably improved She does not suffer from muscle twitches , speech , swallowing difficulties but does get muscle cramps .
she has gained weigh , is eating well and is otherwise seems well.
So a few questions please.
Isi it possible to regain muscle with ALS / MND ?
can EMG tests be inaccurate ?
can some forms of MND be much slower?
Thanks in advance Simon
 

Nikki J

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MND does not get better no.

if you can get and post the emg report ( deidentified) it would be easier to address question 2. Possible ALS is a clinical diagnosis meaning ALS in one body region. It sounds like this might have been maybe ALS. Either way the diagnosis of ALS requires a specific pattern on emg and excluding other things. emgs can be abnormal is many ways for many reasons
yes sometimes MND is slow.
 

Sk971

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Thank you ,Nikki .
I will add the report later , just to add she had long term undiagnosed vitamin B9 deficiency which is the probable cause of neuropathic pain
 

Sk971

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Hi Nikki hope you can see this
F72897E1-0593-4CE6-9D5E-58EEAEB53AF5.jpeg
 

lgelb

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Is she still on the Lyrica? Has her B9 been corrected? Was a cause found?
 

Sk971

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Hi IGelb
She was given a high dose 4000mg vitamin b9 for several months and is now on 800mg daily (need to get her levels checked) .
No cause was specified but I could speculate it was due to 20mg omniprezole reducing bio availability.
We have gradually reduced her long term pregablin down to 125mg daily from a high of 750mg without return of peripheral neuropathy
 

lgelb

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It would help if you could post the table of findings from the EMG, concealing her details.
 

Sk971

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I will have to request it , the Conclusion doesnt read to well . Do you have any thoughts on what I’ve provided, ?
I must admit I’m getting a bit worried overall improvements in her physical state may have given us false hope.
 

Nikki J

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It is suggestive of mnd but the limited description and not seeing the table makes it hard to say much. The fact that they felt the need to repeat the study says there must be more to this. of course coupled with her clinical improvement though that is complicated by her other known physical issues ( stroke, hip surgery) being things that can improve.
is there anything scheduled medically at this point? I know that you are locked down but there are plans to reopen I think. Where is she supposed to be followed?
 

Sk971

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We have been asked o go to a further EMG and telephone appointment with a neurologist a Central Middlesex Hospital London .
 

Nikki J

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Good luck. Let us know what happens
 

Sk971

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Thank you for your help Nikki , I need to speak to my mother about this, the thought of which is giving me panic attacks.
 
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