Is there burning nerve pain associated with PMA?

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brian32

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I was diagnosed with CIDP by one Neuromuscular disease specialist. He said that I had evidence of demylination on my nerve conduction study and I also have a burning pain on the side of my right upper thigh and on the back of my left thigh (nerve pain). Another specialist in the same Department most recently diagnosed me with PMA. Are demylination and nerve pain associated with PMA or for that matter any motor neuron disease?
 

Mark

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Hi,

I have a variant of PMA confined to my neck on down to my hands. I have not had sensory pain nor do I believe it is part of the condition. I don't know about the role of demyelination. The only pain I experience is cramping of muscles in the abdominal wall. As I recall the lack of pain or other sensory symptoms pointed away from treatable conditions.

Mark
 

Bobby C

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I was diagnosed with PMA by a neuromuscular specialist. I have never had pain of any kind with this condition. The only pain I have is from an arhritic condition in hands and fingers.
 

mamaoftwo

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Brian

I don't have a diagnosis yet but expect one at next appointment - too much progression for them not to see something! I had no idea that they had changed your diagnosis from CIDP to PMA. When did that happen? You were one person on here who gave me hope for a treatable condition. I have a lot of similar syptoms to you. I too have sensory stuff going on and presented initially with that. Burning pain which comes and goes - scalp, arm, throat etc. I also have a sensation of freezing water being poured on to me sometimes and get what I would call a cobweb sensation on my skin. That along with all the other usual lower motor symptoms. It is very confusing. But from what I understand it is good that there is demylination on your emg because I do not believe that is seen in ALS or variants thereof. Good luck.
 

wright

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Now I'm really confused, Brian. You indicated that your EMG showed demyelinization and not denervation (no fibs or no positive sharp waves or no large motor unit potentials). Isn't that right? If so, how on earth can they diagnose you with PMA? I would demand to know the rationale behind it. That makes absolutely no sense.

Do they think the burning pain is unrelated to your condition? It is very rare to see that with ALS, to the point where it is generally accepted that burning nerve pain doesn't occur with ALS (ergo my reply to your thread).

You also said you're having some other type of pain with your atrophy: what kind of pain is it and is it before the atrophy . . . during the atrophy . . . after the atrophy or all three. So sorry to hear that you're having to go through this.

Take care and we're all still hopeful that the new diagnosis was made in error.
 

brian32

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Reply from Brian

Demylination was seen on a nerve conduction study last November. I was diag with CIDP and had 5 IVIG treatments since then with seemingly no response. So my Neuro referred me to the Senior Neuro of the Dept. The Senior Neuro did an EMG and NCS on me (motor nerves only) and diagnosed me with PMA on my BDay back in March (sad BDay btw). I told him about the burning that I've had in both legs and he said that is rare with a MND, but that he has seen it before. He discontinued my IVIG treatments and I feel like I have digressed quickly. Here's the kicker. I went back to my primary Neuro 2 weeks later and he still thinks that I have an autoimmune disorder (CIDP or MMN) based on demylination that was seen in November and that I have burning nerve pain in both legs. I know that MND can strike at any age, but I'm only 33. Anyway, these guys work in the same hospital and are in the same Dept., but are both giving me totally different diagnosis'. Go figure. I'm sticking with the CIDP diagnosis. Anyway, I am being referred to Duke University on June 5th for another opinion. Praying that I dont have a MND. Thanks for your reply. Brian.
 

crystalkk

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brian,

Good luck with your appointment, I hope they agree with nuero #1.
How come nuero # 2 only did the motor nerves on the NCS, did he give you an explaination.
 

wright

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I would hold onto the CIDP diagnosed, too. Some people simply don't respond to IVIg, so that is easily explained.

As far as your burning, nerve pain: Is it constant or is it only felt upon exertion? Does it appear to be in your muscles or elsewhere? Was it there initially with your symptoms? You also said you feel it in your legs: Do you have any problems with your legs?

I also asked you previously about the other type of pain you are having with atrophy: What does it feel like and did it happen before, during or after atrophy?

Again, hang in there Brian. We're all thinking about you.
 

brian32

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Reply from Brian

Neuro #2 apparently felt strong enough about his pre-established beliefs that he didn't need to look at sensory nerves. I'm not sure why he only looked at motor nerves.










brian,

Good luck with your appointment, I hope they agree with nuero #1.
How come nuero # 2 only did the motor nerves on the NCS, did he give you an explaination.
 

brian32

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Reply from Brian

1) Any idea how long it may take to respond to IVIG? Or could there be some recovery taking place that I just wasn't feeling yet?

2) Burning is on the outside of my right leg that runs from just above my knee to about 3/4 the way up my leg. It started in November of last year. I also have the same feeling in my left leg, but in a different place. It starts at the bend of my leg (above my calf) and runs about 1/2 way up the back of my leg. It started in April of this year.

3) The burning is not felt upon exertion. It is primarily felt at night while lying in bed and can be constant at night. I sometimes notice it during the day, but it's when I'm not doing anything (sitting). It's hard to tell, but it feels like it's right under my skin. It could be in the muscle, but I think it's nerve pain (maybe exposed nerve from demylination).

4) I do have weakness in my legs. No noticeable atrophy yet, but if it follows the course of my upper extremities, I know it's coming.

5) No major pain with atrophy. In my upper extremities, I had days where I had tingling, numbness, and burning, but for the majority of the time it was painless. The pain that I did have was before and during. Right now, I don't have any sensory symptoms in my upper extremities. Just weakness, atrophy, and continuing progression of this disorder.

6) I dont know if I told you this, but the Neuro that diagnosed me with CIDP started me back on IVIG last week. He's pretty convinced that it's auroimmune. I hope he's right.

Thanks for your reply. Do you have PMA?

Brian



I would hold onto the CIDP diagnosed, too. Some people simply don't respond to IVIg, so that is easily explained.

As far as your burning, nerve pain: Is it constant or is it only felt upon exertion? Does it appear to be in your muscles or elsewhere? Was it there initially with your symptoms? You also said you feel it in your legs: Do you have any problems with your legs?

I also asked you previously about the other type of pain you are having with atrophy: What does it feel like and did it happen before, during or after atrophy?

Again, hang in there Brian. We're all thinking about you.
 

wright

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Hey Brian

I don't have PMA. I was diagnosed with some type of brachial plexopathy (goes by many different names). It's not life-threatening but I've had a lot of neuropathic pain (in both arms from deltoid down to fingers and some in my upper back . . . which persists to this day), weakness and atrophy (atrophy confined to right side of upper body and right upper arm and deltoid but weakness in both upper arms and deltoids).
It happened really fast: weakness started in early December followed by atrophy in early January (which is when the neuropathic pain started) and then atrophy stopped by early February.

I'm about to ask you a lot of questions, to see if I can help you more. Bare with me.

1) I don't know too much about IVIg treatment, but if your neuro is starting you up on it again, I would say that's a good sign in that he thinks another round is what you need to get results. He probably has seen it work in that way in the past. Doing another NCS/EMG would let you know if you were recovering subclinically. I'm sure you'll get your answers when you go to Duke.

2) I know of only one study that addressed ALS and sensory symptoms and they were seen in only 20% of cases (neuropathic pain was only seen in 10% of cases) explicitly. When it came to those sensory symptoms, nearly 70% of the time, they were either in the hands or the feet. In the other 30% of cases, they were seen focally in only one limb. That is good news to you, since you have burning sensations in both of your legs.

3) It sure sounds like neuropathic pain to me and to your neuro as well.

4) Is the weakness in your legs the same type of weakness you felt in your arms? Did it start in your feet and then move up or was it the whole leg at once? Is the weakness constant or will it come and go from one leg to the other? Do you feel more weak when you have the burning pain?

5) How quickly did your hands and arms atrophy (were you measuring)? Did one arm atrophy and then the other one follow or did it happen at about the same time? How long after weakness did atrophy occur? Is it still progressing or has it stopped and did it stop at any time during the process?

I hope this wasn't too long. Looking forward to hearing back from you. Take care in the meantime.
 
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