Doc Says He Thinks Its Pls

[Zaphoon]

You could call it 3-4 years if it started in my shoulder (where there is atrophy) but only 1 year if it started in legs. The orthopedist said the right shoulder (first one affected) suffered from tendonopathy but I wonder if its not from the same thing that brought everything else on (weak legs, fascics, cramps, weak forearms and voice). All of that stuff has come on within the last year. It would make for pretty fast acting PLS.

This whole thing is kind of screwy but time will tell the tale.

I appreciate your encouragement. You are a big help! Thanks!

 

[wheeler641]

Zaphoon, your symptoms are soooo similiar to mine it is scary, I too had a frozen shoulder about 2 or 3 years ago, I had a few injections in it and it eventually went away. In a previous post you mentioned that the doc thought you might have polymyalgia rhuematica, I too was diagnosed with that initially and am still taking prednisone for that but I do not think it is helping. As I think back I have had a lot of symptoms of something going back over 5 years. I have been dealing with leg cramps for about 5 years now, they are better now that I am taking magnesium, potassium and vitamin D. All of these were low on my tests last time, my magnesium very low, I think it should be around 14., mine was ten, also my vitamin D was only 5! I hope upon further investigation they find something else wrong with you and if not then I hope it is really slow progressing margaret

 

[sral]

Margaret have you been diagnosed with a motor neuron disease?

 

[wheeler641]

no, i have not, am being tested for just about everything right now. What fits with most of my symptomes is chronic lyme. Did have a positive test for lyme about a year ago and took antibiotics for 2 months. I am seeing a rheumatoligist right now, I do not have any weakness, just cramps and lots and lots of twitching. My regular GP which I have been seeing for over 10 years thinks other things need to be ruled out before I see a nuerologist, hope this helps, margaret

 

[Zaphoon]

Margaret,

Last spring, a friend of mine that is a nurse was observing how I was moving and stated she thought it looked like I could have some kind of neuropathy. She suggested I get a referral to a neurologist. I did and this is where it brought me.

The polymyalgia thing must be dead for now. I take a magnesium supplement but it has no effect. Symptoms are being caused by something else. My legs have a continual crampy feeling and constant fascics. I've gotten use to it.

Another mystery is having both shoulders effected. I was losing weight at a rate of about a pound a month but that halted, somehow. Now, the weight seems stable.

If I were you, Margaret, I'd about getting a referral to a neurologist. It couldn't do any harm!

 

[wheeler641]

if nothing concrete shows up in this last slew of tests I am having, I am going to ask for to see nueroligist. They are doing some more advanced test for lyme and I still have to go for an mri with contrast. When I went to the E.R. they did an mri, but it was just a quickie I guess just to make sure I was not bleeding into my brain, my doc still wants another one. I sure hope they find something with this round of tests. I guess I would be a little more worried if I had any kind of weakness, but I don't think I do, still can move furniture around, carry in heavy bags of groceries and lift just about anything. I have rather than a weakness a stiffness if you know what I mean, It takes me a while to get going in the morning and by afternoon, I feel o.K. I am not tired at all and usually only get about 6 hours of sleep a night. Zaphoon, did you have an elevated sed rate too? I just hope something shows up with this next round of tests. margaret

 

[Zaphoon]

Sed rate was slightly elevated as was cpk but not enough to cause concern or point them in any certain direction.

 

[wheeler641]

I reread your posts but I do not see it anywhere. Do you have any weakness, perceived or detected by the neuro? I know you said you had some atrophy, with atrophy do you always have weakness? I wouldn't know what atrophy was if I did have it. I have looked at pictures but the ones I looked at it was pretty advanced. What does the start of atrophy look like? Also do you have any pain, not counting the cramping which I aware can be pretty darn painful. I mean in your joints, kind of like an arthritic sort of pain all over? sorry for all the questions, just trying to understand a bit better. margaret

 

[Zaphoon]

Margaret,

I do have weakness. I notice it most in my arms but the doc thinks my legs have gotten the weakest.

An MRI picked up atrophy in my shoulder muscles. The sports medicine doc that looked at that a few years back attributed the atrophy to disuse. This was way before anyone started to check me for MND. We figured the disuse was probably from tendonopathy.

When my legs started to feel heavy in the latter part of 07, we still weren't beginning to think anything could be causing both problems. When my opposite shoulder started to feel weak, that is when alarm bells started going off in my head. So far, it has taken 2 physicals, 2 GP's, 3 neuros and one sports medicine doc to get me this far.

You know you have weakness of some sort when you start having difficulty with strength in performing tasks you previously had no trouble with before. I can't lift things I use to be able to lift. Walking up stairs requires more effort. Full coffee pots are now handled with two hands vice one, etc...

A big problem with me is also spasticity. I cannot go through the day without my neck and upper back muslces in a knot. I don't say this to whine or complain but rather explain the symptoms. I'm in far better shape now than I probably will be this time next year. I am in hopes I get something for all of this cramping.

 

[sral]

Zaphoon,

You are a very courageous person and your message was not taken as complaining. Sharing symptoms often helps.

I sure hope that you are wrong and that your in the same shape or better this time next year as you are now!

By the way, were your legs weak and experience fasics when you had your EMG in the summer or has that started since then?

 

[olly]

kim.
i have atrophy and weakness in my shoulders,i used to get alot of fassics there.
also i get joint contractures in the shoulders.
maybe the frozen shoulder problems could be contractures if you have atrophy and weakness there?

 

[Zaphoon]

SRAL, My legs were weak and fasciculations were present when the last EMG was done in July.

Caroline, I'm not sure I have had any joint contractures but my shoulders do twitch from time to tIme (sometimes they are heavy duty jerking type twitches).

A few good things are that I seem to have stopped losing weight and I've gone from a 10 down to a 5 on the spastic end of things (my numbers).

 

[lovelily]

Hi Kim~I wanted to say thanks, for answering my post. I give your doctor a thumbs up, for at least speculating as to what your trouble is.

Do he/she ever talk about doing a muscle biopsy...? Of course you know, I am totally confused as to my situation.

Keep your chin up, as you continue to travel the road of circles. Don't get dizzy on your journey!

 

[Zaphoon]

Lovelily,

He doesn't seem to want to get too invasive just yet. He'd rather do more blood work for now.