Progression.

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Mike12345

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Hello all.

I had a previous thread which was closed, and I am unfortunately back with news on progression.

Initially when I posted I was undertaking several tests. I had some 5 emgs which all had various different abnormalities (none with signs of acute denervation), but were all not overly specific. Settled on a diagnosis of cramp fasiculations syndrome.

I attempted to get on with my life. However things didn't progress as hoped, and I am now presenting with substantial atrophy in all 4 limbs, neck atrophy ,(5cm loss of diameter in 2 months), I also now have a hoarse voice, this feeling is the scariest thing I have ever felt. It is very difficult to sleep, as my throat feels it has something permanently stuck in it and I can't get enough air through.
Where my muscles once were there are fatty deposits like mushy cellulite. I was a very muscular person my whole life.

It is definately true that when u have true atrophy and weakness you will know for sure. It is unmistakable.

I have also noticed I have become very self centered and obsessed, and my personality is not me. Not sure if this is fear or FTD.

I have my neurologist appointment tomorrow to confirm this clinically. My GP has noted the changes.

I am struggling very much with the gravity of all this happening at 32.
 

KarenNWendyn

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If it were ALS/MND, your EMG would have shown characteristic changes consistent with ALS. So something else must be going on. Let us know what your neurologist says.
 

affected

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Hopefully you will get some answers at this appointment.
My husband died of bulbar onset ALS with FTD - he didn't share a single symptom with you, not even one.
People with FTD do not believe there is anything at all wrong with them and are convinced everyone is against them in trying to show there is something wrong.

You don't indicate any failures, so whatever is going on, physically and mentally, I truly hope they find the cause as it is going to be something that can be treated if you will accept what you are told and follow through with treatment. I wish you all the best.

That's all we can say until you let us know the outcome of your neurologist visit.
 

Mike12345

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Thanks Soo much for the replies.
My Neurologist said he is concerned, and can see changes but also said he isn't sure what is going on.
He did suggested that cramp fasiculations syndrome could be causing the changes to my muscles. I'm a bit suspect of this as I haven't ever had a true cramp since this staryed, which is the hallmark of the condition.

From what I read that condition doesn't make muscles atrophy.
I thought CFS was a misdiagnosis and indeed ALS if there were clear signs of atrophy? Which he says there definately are.

Am I getting the right advice from him or should I seek another opinion?

I am booked in for another EMG, but it could be weeks to months away given the current climate.
 

KarenNWendyn

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Is your neurologist a neuromuscular specialist? If not, then I suggest getting an opinion from one.

Also, have you had an evaluation from an internal medicine doctor looking for autoimmune conditions and metabolic disorders and other systemic conditions?

Not all atrophy is MND. In fact, most is not.
 

affected

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The thing is Mike, you do not have a single ALS symptom, so whatever is going on is likely to be treatable. Let the doctors do the work rather than future worrying yourself. Let us know what your doctor diagnoses, but we can't really do any more through text.
 

Mike12345

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Thanks again. I have seen a specialist rheumatologist who said it was nuerologic.

With the fasiculations, muscle loss and dodgey emgs it's just difficult to change my thought pattern.

But I'll take the advice and wait and see.

Whinging on here is not going to achieve a damn thing but waste people's precious time. Which I have done already.

Take care.
 

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The advice is to work with your doctors. Most neurologists either never see a case of ALS in their career, or see one or two. So a rheumatologist saying it is neurologic does not even begin to equate with, it is ALS. Most neurological conditions are treatable.
All the very best.
 

Mike12345

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Sorry, one last question. I have been trying to get on to my neurologist and ask, but haven't had a reply.
I have an EMG scheduled in the coming weeks, and have been on diazepam (phenytoin) for my twitching.
Should I be stopping this before the EMG? As it slows my twitching would it mean the test may be inaccurate? Or will the EMG pick up abnormalities in any case?

Apologies, I just want a clear test and am getting no response from my doc
 

Mike12345

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Also vallium at night.
 

Nikki J

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The meds should have no effect on the emg. Unfortunately they do not reverse denervation which is what the emg would detect in ALS. If they did we would all take them
 

Mike12345

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Thanks Nikki.

Makes perfect sense.
 

Mike12345

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I was lucky to get into another specialist within the week as I didn't believe the assessment that CFS can cause changes to muscles as previously told.

The new Neurologist (special interest in muscle and nerve conditions) saw my fasiculations, but said it looked too intense to be MND and it does not happen to people my age period.
I was certain that they couldn't tell the difference until they stuck it with a needle ?? Seems to be mutliple studies on this. Twitching is getting extremely intense and those exact muscles are going squishy. All specialslists agree I have bilateral thenar and hyper thenar atrophy, and overall changes.

I really think I am getting poor advise from the supposed professionals.?

My physio has written a letter to my PCP as
she found as she put it "profound weakness 2+" in my thumb extensor (I had no idea until she did a simple test), a huge reduction in grip strength, and drastic loss of muscle bulk all over from january (arms, calves especially).

My physio says that my weak thumb movement is controlled by the radial nerve, but ive had nueros say my hands are due to a slightly slow ulnar nerve. Cannot explain the rest of me though.

I know everyone says to trust the nueros, but the ones I see don't seem to know even the basics. 6 months ago I ask about PMA, and had a response (what's that?).

I have videos of the twitching but assume that's something u guys definately don't want to see.

I suppose I'm frustrated at the Drs and frustrated and what's happening to me. I'm struggling as I don't see this turning out to be a positive outcome or anything else.
 

Nikki J

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Why is your location New York? It is incredibly confusing. I was all ready to ask who you saw there when I remembered you are really in Australia. It doesn't help either you or us if it is wrong. I thought you had at one point seen Dr Katrina or Katriona something who is a known mnd specialist? If that was you I really think you need to go back to her or to the person you identify as most expert ( which may not be the person you liked best) and commit to being followed. Neurologic answers are not always quick or easy. The more you change doctors the less likely you are to get that answer. I will tell you there are a fair number of people who spend years looking for answers but it would be rare to non existent for the answer to be ALS
 

Clearwater AL

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Reading over your previous Threads and replies you never did post your recent
EMG report, the Summary/Conclusion, somewhat promised, would be so helpful
answering your numerous questions. Before going on further that would be very
helpful.

Will the coming EMG you posted above be your third?

If diazepam slows your twitching that is a questionable result concerning the true
cause of fasciculation in ALS. Nikki, Karen, Laurie ?
 
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