Progressive neurologist issues, may i ask you for opinion?

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sefarion

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Hello!

First of all, I want to thank you! You are doing an amazing thing despite your health status

Secondly, I am not a native speaker, so apologize in advance about my grammar

Thirdly, Of course, I have already read „sticky note “but I would like to discuss it with someone.

About me:

Hello again, sorry for bothering you but I would like to hear your opinion, about my problems, based on your experience. I am living in the Czech Republic and even if our healthcare is really good we have one big issue, doctors don’t talk with us much even if we ask.

I am 29 male, I hope that I am not usual “anxiety twitcher”. I have analyst calm mind, already beat cancer (at least for now) four years ago, so I am not freaking about "small things"… currently already working with my GP and neurologist.

Problems:


In February I had really bad flu/COVID whatever it was. From that time, I am always tired (used to sleep for 6-8 hours now I need at least 10+). And had non-specific pain in all my limbs. I have tried to usual way to rid of it (more sleep, light exercise, healthy diet, pills -> nothing helped). Can’t focus on stuff how I used to.

In time more problems occurred, in March burning sensation in my limbs, also sometimes my limbs are… hmm.. like “part of them doesn’t belong to me at all”.

In April twitching in calves occurs and through May and June spreads into the whole body. I have also more pain. In calves and elbows twitching is 24/7 sometimes more sometimes less. On the left side, it's like 100% more than on the right. Also, this “24/7 twitching” I don’t really feel it, but I can see it. It’s like snakes moving under my skin” Sometimes I have “normal” twitching when I can see and definitely feel it (but it has a short duration and its much less common).

I don’t know how to describe more of my pain…. It can be cramps, but not that kind when “someone wakes up and can't stand up and it hurts terribly for the moment,my pain is "less painful and more durable”.

At first, I thought it’s just “after sickness stuff”. I also thought it was because of stress (living alone, my family is far away, my dad had a big health issue I couldn’t help, also problems at work, I was finishing my master degree, break with GF) I ate a lot of magnesium and B complex and tried to no bother much about it. When my “self-care” didn’t improve my state I give up and visited doc.

I have visited my GP, he runs a few blood tests, and everything was okay. So, I was sent to a neurologist.

I was checked with these results: (I don't have results in my hands, I just typing and translating what I remember or what is written in messages for my GP)

Quadhyperflexia, indistinct sym. weakness.

MRI spine cord and brain was clear, (only minor changes)

Emg without a needle: “oversensitive” muscles

Emg with the needle: neurogenic changes in some muscles in both legs and right hand

Somatosensory evoked potential: Abnormal in my legs left side is worse.

Currently, I am waiting on results of MRI spine only and next week I should have a lumbar puncture


I don’t have foot drop, can use all my limbs, can jump, my dexterity is… a little bit worse, but it's manageable. I didn’t have any fall, but I have to more focus on my walking or on my balance (which is weird I never ever have to think about how I should use my limbs at all, now I have to). I mostly just feel weak (I used to be fanatic swimmer, so I was “strong”) lost most of my muscles.

What do you think about my problems? Based on the results, something wrong is definitely going on with me... But nobody is talking with me...:( I didn’t even want to bother you, but when I received my EMG results and my neurologist just tell me that she needs to run more tests, it makes me for the first time little bit insecure. And of course when I tried myself to get some information on the internet many pages with information leads... here...

Thanks for reading!

Tomas
 

Nikki J

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It doesn’t sound like ALS.

re tests. Evoked potential isn’t an ALS test. We generally don’t have it done. When we do it is normal

emg without the needle = ? NCS generally normal in ALS

emg with needle. Neurogenic changes is vague but doesn’t sound like how they would describe ALS changes

your symptoms don’t sound ALS like either

post viral neurologic symptoms have always been around and can take months and months to get better. With covid which you say you might have had this seems to be even more of an issue.

it sounds like your neuro is looking into things appropriately. Let us know what the final answer is but it isn’t looking like ALS
 

sefarion

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Hello, i have a small update.
MRI spine was also clear, results of spine tap should be next week...

Meanwhile my twitching and cramping keep gettings worse, i also feel so weak... (i cant hold my phone just with my arms for long time for example)

I have asked directly today my neurologist if they know and what they think... They didnt give me clear answer so i have asked again "and what about als"... "Did my emg "scream" als?"

Gosh i shouldnt do that. Doc gave me so nervous and sad expresion -" we think about it we cant rule it out" and left me alone in hospital bed. I am so sad... ☹️
 

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gosh doesn't sound anything like ALS to me - I hope they sort this out with you soon.
 

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We could be more helpful if you could post the EMG report. But don't lose heart just because your doc said it cannot be ruled out. ALS does not typically start with feeling weak, twitching, "snakes under the skin," and cramping.

Even if the neurologist thinks it is something serious, we would advise you to get a second opinion anyway. Some doctors may feel that they should tell you that it cannot be ruled out even when there is only a minute chance, whereas others would laugh and tell you there is no chance, with the same information.
 

sefarion

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Thanks for your supportive words ❤
i will try to get copy of emg results today so i could post them here...

I didnt have issue to accept cancer diagnosis and fight for my life 4 years ago... But this.. Is different....

May i ask which (if) any disease mimic my symptoms? (based on symptoms and all tests and their results)

I am rly sorry that i have to bother you... But you have the knowledge and what is the most important you are willing to speak with me.
 

sefarion

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There is emg report, i hope that is readable..
 

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Nikki J

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The format of the report is very different than what we usually see. On the first page there is what looks like it might be an interpretation at the top but I can only see the bottom line It might be my device but can you post what it says? All I see in the charts is polyphasic mups which if that is all they saw would not indicate ALS but I don’t see the other things Perhaps they only show abnormals and the summary indicates every else is ok?
 

sefarion

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Hello, I hope that everyone fights hard and has a nice weekend :)

Sorry for late respond I was too tired after a spinal tap and too sad to respond. I have sent only what I got and have no idea what it does mean.... ☹

Now I have tried to edit it to "look better" and reupload it with full doctor commentary.

First Page is about NCS probably and Emg needle summary (not sure my guess)?

"Jehlova emg" = needle emg
Doc first commentary: quadhyperreflexia still exists, positive PJI (it was Hoffman), the patient is able to stand on hills and tips, he can run, can do squat, visible only fasciculations on tripeps surae

Combined second and third pages show results per muscle where was needle EMG done i guess..?

with "after commentary by doc"

M. Tibialis ant right
: fibrillation numerous, fasciculations sometimes, curve 5/5, ampl. 8mV, in potential analysis neurologic finding (captured high amplitude potentials, duration delay)

M. Tibialis ant left: fibrillation, captured complex repetiv. discharge, no fasciculations, curve 5/5, ampl. 4-5mV in potential analysis neurologic finding

M. Vastus lat. right: without spontaneous pathological activity, sparse curve, lowered power, ampl 2mV

M. Gastrocnemius left: no fibrillation, sometimes fasciculations, captured complex repetiv. discharge, curve 4/5, ampl. 5mV in potential analysis neurologic finding

M Biceps brach left: without spontaneous pathological activity, curve 4-5/5, ampl. 5,5mV in potential analysis normal finding

Ext. dig. communis right: no fibrillation, sometimes fasciculations, sparse curve, lowered power, ampl 3mV


Neurogram n.peroneus com bilat, n tibialis. bilat. a n. sureales bilat in the norm, only extended F wave latency for n. peroneus left

Doc summary after test, is about existing "peripheral motoneuron lesions", NCS study can exclude polyneuropathy. Spinal tap is required and after three months second EMG and MEP. For now without clear etiology.

So what do you think about my needle emg? Please

I feel still tired as never before in my life, I have stared ignored fasciculations because they are now almost everywhere, and pain is my daily companion, what scares me the most I keep losing my strength a lot. I still can do anything, but if this going to continue I feel that my left arm (lost there almost all muscles from swimming, between my thumb and index finger is... nothing... only big hole with 24/7 twitching) or one of the legs soon give up.

Thank you

Tomas
 

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affected

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thanks for the interpretations - not sounding the least bit like ALS.
Also with ALS you would have failure to do things - not continually feeling like you are getting weak and soon won't be able to.
That is something else - you doctor seems to have made a reasonable plan to check on your again but for now there is nothing of true concern.
That's great news, if you can't stop worrying, go back to your regular doctor and discuss how you can be helped.
 

sefarion

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Hello,
I have another small update: I got results of my spinal tap and it's (I hope that I translated it right):

Slight elevation of total protein in basic tests
There is an intrathecal oligoclonal synthesis of all immunoglobulin heavy chains
Slight elevation of inflammatory markers in cerebrospinal fluid and serum
A positive finding for these antibodies: anti-GM1, and weaker positive finding for anti-GM2, anti-GM3 -GD1b, -GD2, -GD3 in class IgM.

Does it point to ALS or from it?

Doc told me that they still don't know, and they are sending me to a neuromuscular specialist in September...

I am starting to be a little bit desperate.

They do more and more tests without results and my issues slowly getting worse and worse everything what I mentioned in posts above still persist and it's same or worse (especially pain its much more worse, for example, I can hold my phone just for a few minutes until horrible pain occurs and i have to put it down (my hands lost all muscles and twitch constantly 24/7).

Thanks!
 

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No - those results don't indicate ALS and your symptoms point more and more away from ALS. Pain from holding a phone is definitely NOT ALS. I hope you get some answers soon.
 

lgelb

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Those results may relate to an autoimmune disorder such as multiple sclerosis, which is much more treatable than ALS.
 

sefarion

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Hello, thank you kindly for your time and answers! <3

I also thought after spinal tap results, that it's going to be something with an autoimmune disorder, but I don't know then why they are sending me to MND neuromuscular specialist. :(

Well, I will know more in the middle of September they are going to hospitalize me in the biggest hospital in-country and run all tests again with a consultation an MND neuromuscular specialist.

I will write my final results/diagnosis in September....

Thanks again for your time and best wishes to all of you
 

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neuromuscular specialists treat MS.

Good idea now to just look after yourself and wait, it's not long til you go get this thoroughly investigated at all. Spend the next few weeks wisely for your physical and mental health as no matter what you find out, you won't get this time back.

All the best, and do return then to let us know the diagnosis.
 
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