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How to handle waiting for a neurologist appointment?


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Old 12-27-2017, 07:53 AM   #1
MrDavid55
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How to handle waiting for a neurologist appointment?

Hi everyone, I am new to this forum and I would be so very grateful for any advice on how to mentally deal with waiting for a neurologist appointment.

The waiting is killing me.

I booked the appointment because I have symptoms that I feel are highly suggestive of ALS.

It all started about a month ago, with the muscle right below my pinky finger on my left hand making huge contracting twitches in series of 7-8 in row, at least five times daily.

The twitches have a slow and squeezing quality to them.

That still happens, but now, I see an obvious dent in that muscle that wasnít there before, not a huge one but still, and more twitches have started to appear throughout that arm.

They are of a different kind, smaller and quicker rather than squeezing, and change location all the time, a bit like popcorn underneath the skin.

That same kind of twitches have now also affected my legs (calves and thighs) and parts of the other arm since about a week ago.

Since about four days, there is a constant crampy feeling in my arms and legs, which gets worse and really hurts now and then. Just like the twitches, this feeling affects the entire legs and arms.

Starting two days ago, I have felt occasional twitches in back and lower abdomen (felt one in the back just now while typing), but they do not yet come in series like those in the arms and legs.

I can feel as well as see all the twitches very clearly, most of them are like popcorn under the skin.

Left arm feels weak, and often twitches after use or even when I place the elbow on a table.

I have done a full blood work about a week ago, it came back normal so there are no deficiencies and no inflammation etc.

And before anyone suggests that ALS canít start like this, oh yes it can. I have read enough patient stories and medical literuature since symptom onset to know that it certainly can.

So whatís your best advice for keeping oneís mind off the symptoms while waiting for the doctors appointment?

As an additional question, does anyone know if there are other motor neuron diseases besides ALS that are less serious but have the same symptoms?

Deeply grateful for any input or advice.

 
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Old 01-05-2018, 09:30 PM   #2
TimAlley
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Re: How to handle waiting for a neurologist appointment?

Hello MrDavid,

I saw noone has responded so I figured I would.

Let me ask a couple of questions: What is your age and is there a history of neuromuscular diseases in your family history?

It is very difficult waiting to see a specialist. I can tell you what will happen. They will do a clinical exam first. They will then send you for more extensive bloodwork, mriís snd an EMG.

So in regards to your symptoms, yes it could be ALS..it could also be 100ís of other conditions. Peripheral neuropathies alone total in the hundreds.

I will also tell you that helped me. Each day that goes by and your muscles still work is a good sign.

Good luck,

James

 
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Old 01-05-2018, 10:09 PM   #3
MrDavid55
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Re: How to handle waiting for a neurologist appointment?

Hello James,

thank you for replying.

I am 42 and I know of no other cases of NMD in my family history.

Then again, most cases of ALS appear to be sporadic.

I agree that every day my muscles still work, athough sore and crampy, is a good sign, although it can probably take a few months from twitching onset for weakness to reveal itself.

That's why I'm glad that I will be seeing a neurologist right away, who is known to promptly order EMGs, x-rays etc. at the slightest suspicion of serious disease, and I guess an EMG will show abnormalities by now if I have ALS.

Thanks again for your reply, it makes the waiting less difficult.

 
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Old 01-06-2018, 05:26 AM   #4
TimAlley
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Re: How to handle waiting for a neurologist appointment?

Hello MrDavid,

42 male and no history of NMD, is a good start. I am very familar with how you are feeling. You can go back and check out my past thread if yiu get bored.

You are correct that the first symptom of ALS can be twitching. It is also extremely rare to present that way.

I am sure you have researched BFS, CFS, MG and many of the other causes. I will say this, there is a very good possibility that the doctors will not find a cause for your symptoms. I have been to three neurologisrs and s rheumatologist, undetermined polyneuropathy.

I have twitches 24/7. I also have cramps and spasms in most muscles throughout the day.

A clinical exam and sudsequent EMG will go a long ways to ruming out NMD.

Goid luck,

James

 
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