Progressive neurologist issues, may i ask you for opinion?

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sefarion

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Once again hello,

Thanks for your reply and kind words but in my country, we have specialized centres which are focused directly on treating MS, so if they thought that I have MS they would send me there (my neurologists actually discussed my symptoms and test results with MS clinics before they decided to send me to a neuromuscular specialist).

So MS is "sadly" off from the table.
I also googled the name of my doctor in the next hospital and he is a big name in diagnosis MND in my country. :(

Meanwhile, my left hand is still getting worse and worse. (but all limbs and neck kinda slowly follow it) I can't carry anything heavy in the left hand and when I play on piano my fingers get "stiff" and "freeze" so I can't play properly. Yesterday my friend visited me and she was kinda scared how my hands look (she weight like 55kg in total and she has more bulky hands than me 110kg heavy guy).

I am still waiting for mid of September and my hospitalization but if I compare my problems from April till now, everything keeps getting slowly worse which make me sad and powerless.

I have to admit I have googled a lot about all possible options and I also read a lot of scientific articles about MND and it sucks.... I just can't persuade myself anymore that it could be something else when I take all my results in the account.

Sorry for bothering you but I needed to talk about it and I don't have anyone else. I am living alone and this is not topic for friends and I definitely can't put more pressure on my parents, they already freak about it a lot. (After my cancer fight they are rly sensitive about my health).

So thanks a lot for reading!

I am going to inform you in September about the final diagnosis

Have a nice day!
Tomas
 

Nikki J

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I wonder if they are sending you there for evaluation for MMN or CIDP ? Both are autoimmune. I know for a fact my ALS clinic sees MMN

i still wonder about the post viral issue. I was reading recently they are finding more and more neurologic issues in post covid patients. The article mentioned GBS which I don’t believe you have but I am sure they will see more syndromes before we are done
 

sefarion

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Hello everyone!
I just come from the hospital and i have the final statement for my problems!
First of all thanks for all your kind words and wisdom, it helped me a lot.

The second needle EMG with a specialist in MND disease throw off from table ALL my worries about ALS from first EMG. YAAY!


Doc told "yes there are some neurodegenerative changes but they are more than one year old and they are probably caused by your chemotherapy which was four years ago) There are no currently running "bad changes" in your muscles.

For all other worried ppl about their possible als:

Always go for a second opinion:
Doc also said that "average neurologist is not specialized in this kind of test and his examination has to be always re-evaluated (he literally said that needle EMG from the unexperienced doc (which was clearly yours) can cause a lot of dmg for patient mental health in these cases).
He did for me like 8 muscles and everything was okay (except from chronic changes ofc) and I could see really difference how test was done compare to 1time.

All other symptoms can really mean nothing
I am still tired, twitching 24/7 everywhere, pain and cramps and quadhyperreflexia and positive pyramid phenomenons, feel weak and lost a lot of my muscles (and still my SEP results on legs are bad)


They just told me that is combination of my illness from February + stress which "awake" nerve damage from my chemotherapy.

So they gave me Atarax + Magnesium and looked on me as on crazy man (i was honestly scared after first needle EMG and all other "symptoms").

They said that they can't help me more and kicked me from the hospital but it's fine.. i can handle it now

I HOPE that i will not have to write here again...
THANKS for you time!
And i BELIEVE that they are going to find a cure soon!
I am going to do small donate, I wanna help as thank for your time :)

Best regards Tomas
 

affected

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huge congratulations to you!
Please do take this and stay away from here.
If you have more symptoms stick with your doctors, but we are very happy to say goodbye and all the best recovering and moving into a life of health. Recovery can take some time, I've had some post viral issues when I was younger that took up to 2 years to fully resolve, but they did resolve.
 

lgelb

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Congratulations. I am sure you will continue to improve. Thank you for following up, since it does help others.

Best,
Laurie
 
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