Pains and ALS

[CB1977]

Hello Everyone-

I posted around a month ago regarding the diagnosed from my ENT of vocal fold atrophy. I still have all of the symptoms that I have dealt with since the inception of this whole thing last May. My question is this-

Over the last 3 weeks I have developed pain in my left wrist and left ankle when I lean or put pressure on it. My right hand also hurts if I squeeze something, this has been going on for 2 months now. I dont sense any profound weakness, but I have pain. I also get a buring (similar to when I used to work out real hard) in my muscles when I do simple tasks. I was wondering if anyone with a diagnosed or without a diagnosed has experienced the same thing or anything similar. Does this have any relation to muscle atrophy?

I am seeing a lyme specialist next month, getting another EMG in May. I will certainly post the results as I know a few people are following my situation as they feel it is similar to their own.

Thanks-

CB1977

 

[wright]

Have your neuro's looked into an autoimmune vasculitis? As I've said in the past, your symptoms line-up much more closely to something autoimmune than ALS . . . and as I have also said in the past . . . sometimes autoimmune conditions can escape detection in bloodwork. Hang in there.

 

[awieleba]

CB~

I have all that, pain in wrists was one of my first things and ankle. And when I hold things or press on things my hands hurt almost like there is not enouph padding? Just wanted to say that I have that as well....................

 

[CB1977]

Wright- I have an appt coming up in the beginning of May. I will certainly discuss this with him. Thank-you for the input!

April- I know you have been recently told you 100% dont have ALS (which is awesome!), have they given you any idea of what you might have? I agree that we have many similar symptoms. I also have pain sometimes in the bottom of the heel of my foot. It looks the same, just hurts to step on. My main complaint is pain and overall fatigue. I can still work out at the gym, but I pay for it 2 days later with extreme muscle sorness, especially the traps and back.

CB 1977

 

[awieleba]

CB~

odd,.. yes the heel of my foot used to hurt. Before all this 'other' stuff (1.5 ys), I went to gp for foot pain. And the heel, she x ray'd my feet and they were fine. SHe said some women have feet pain after pregnancy and that she had foot pain for months after hers. My feet are better these days if I dont wear high heels for long periods of time. They dont know what I have and dont feel that a spinal tap or anything else is necessary as they dont feel that my sx are strong enough/evident to warrant it. I should follow up with rheumy. I have not done that yet but will, I want to know what is wrong but feel burned out and like I may never now and dont know if I want to go around and round with more docs just yet.I saw a 2 rheumy's at that start of this before the twitching. But I will tell you or anyone else when or IF This gets sorted out.

Good luck to you,

april

 

[lovelily]

Hello Wright.. just a quick question, if you happen along to this post, again. How would 'vasculitis' cause something like what CB has, with his vocal cords?

If vasculitis is an inflammation process, how would that make the 'vocal cords' atrophy?

Thanks for your insight!

CB...hope you can get to the bottom of things soon. Enjoy the weekend! :smile:

 

[lydia]

Also curious about the vasculitis question (1st neuro put in her report she couldn't rule out vasculitis). Is it related to small vessel disease (which I apparently have)?.

CB, for a good 10 months I experienced that burning in muscle feeling (as if a tremendous workout) after only ordinary tasks. No ALS here, still no answers.

Take care.

Lydia

 

[wright]

A vasculitis is inflammation of blood vessels. This can happen for a wide variety of reasons (e.g. autoimmune conditions, sepsis, diabetes . . . diabetic neuropathies are due to a form of vasculitis). When blood vessels are inflammed, blood flow to tissues of the body can be compromised. If blood vessels that feed muscles or nerves are affected, then they themselves can become inflammaed or even damaged due to the loss of blood flow (the blood feeds our tissues oxygen and nutrients and also takes away wastes).

If sensory nerves are inflammed or damaged, that can lead to all kinds of sensory symptoms (including a burning feeling). If motor nerves are inflammed or damaged, that can lead to muscle weakness and muscle atrophy. If muscles are directly inflammed or damaged, that can lead to muscle weakness and/or muscle atrophy and/or a burning feeling. Any of the blood vessels of the body can be affected, including those that feed the vocal cords.

 

[lydia]

WRT the autoimmune vasculitis...how is that diagnosed? Is there a simple blood test? I understand that some autoimmune problems evade detection by blood test, so is there some other round-about way of detecting it?

And if you are told you have cerebral small vessel disease (yet without any of the risk factors; so odd) does that translate into a "therefore you have vasculitis"? Because if it does then maybe I have my answer and have had it all along...?

If vasculitis can cause muscle weakness and atrophy...I want to know more about it. CB, it is good to hear that you are going to pursue this avenue with your doctor. From what I remember, the two of us have similar issues (have to go back and refresh memory).

Lydia

 

[planningguy]

CB,

Just wanted ot jump in and add myself to the list of those with no diagnosed (and no ALS suspected) that suffer from the muscle burn after routine activities. The autoimmune vasculitis angle sounds interesting. My PCP thought auto-immune for a bit, but bloodwork to date has kind of put that on the back burner. Is autoimmune vasculitis one that can be difficult to detect?

Best of luck to you!

Robert

 

[lovelily]

Thanks Wright, for your 'logical' answer. One more question. So say in that given situation, and they did an 'EMG', would denervation show, and if it did, how would they tell the difference between one disease and another...especially, if nothing shows in the blood work?

I hope that makes sense. :?:

 

[vmd]

Like a couple of you on this thread, I also have noticed pain in the wrist if I support myself with the wrists. I don't recall having had this problem before the fasciculations, etc., started. In addition, I also have pain on the bottom of my feet when I walk. The toe on my left foot hurts so much when I walk that it feels as if it is broken. Walking around the house (I wear socks only), is sometimes painful. When I wear shoes, the pain lessens. I attributed both the pain in the wrists and in the bottom of my feet to some form of atrophy. Seemingly, the soles of my feet have lost cushion. Again, before these symptoms started I never really looked at my feet, so perhaps what I perceive as atrophy, is in fact the normal appearance of my feet. The onset of the wrist and foot pain, however, is certainly correlated with the ongoing development of symptoms such as fasciculations, increased muscle fatigue, subtle atrophy, among other symptoms. By the way, any suggestions as to what some of you do to relieve the foot pain when walking, especially around the house?

 

[CB1977]

VMD- how far are you in the diagnosed process. I have the pain in the bottom of the heels of my feet and in my wrists. Have you had an EMG?

 

[vmd]

Yes, I had one, but it was given by a local neurologist. I have since found out from many here, that it is preferable to have an ALS specialist conduct such tests. The EMG was negative. I have decided not to pursue other neurological assessments in the meantime. I will wait until symptoms become apparent for one or another condition. Actually, I have symptoms that would indicate Parkinson's disease in addition to ALS symptoms. Perhaps, I will be one of those few that has both (ALS plus or Parkinson's plus). Two close relatives died of Parkinson's disease.

 

[lydia]

Vmd,

Perhaps a more optimistic view...? Like perhaps you will be one of the many that has symptom overlap with MND and Parkinson's that turns out to be something else entirely? My first differentials were MND and Parkinson's, both ruled out.

Lydia