Is this "normal" for MS?

[byyygrace]

For about a month now if I try to walk quickly, squat down, bend over, or raise my arms-my muscles will burn, my heart will race, and I become breathless. Could this be from just being out of shape(I'm not overweight) because I've been ill for a year or is it MS? (I was diagnosed last September).

Thanks for any thoughts or insights on how to deal with this!

Colin

[PastorDan]

I would certainly expect a thyroid tumor to be a possible explanation for one or more of the issues you describe.  However, don't have those particular initials after my name (otherwise I'd bill you for this opinion).

Tammy's certainly right about the possibility of multiple causes and/or conditions, too.  I'd try to work past the docs' stubbornness and/or impatience and try to keep on the hunt for credible answers, along with some symptomatic relief.

[byyygrace]

I noticed that you live in Northeast Ohio! My oldest son, his wife, and 5 of my grandchildren live in Boardman just outside of Youngstown! Where are you at?

[byyygrace]

Thanks twopack!

I thought I had a good GP but since I've been diagnosed it seems she's afraid to deal with me and my MS diagnosis. The last three times that I've called she has referred me to a specialist (a urologist and a gynecologist) or sent a message through her nurse to wait and see what my neuro says! And, the neuro always says, "See your GP"! It's getting frustrating.

I will call tomorrow and see if she will see me. If not, I may need to look for a new GP. I almost don't want to mention MS when seeing a new doctor. It seems they try to attribute every symptom to it.

Thanks again for the input!

Colin

[twopack]

Hi Colin.  I'm wondering if you have a good primary care doc who will be able to see you in-between your neuro appointments or as questions come up that could have non-MS explanations.  I always feel better when I have a good general practitioner working for me to pull all the specialist information together (and wish I had one currently!).

You say, "if I try to walk quickly, squat down, bend over, or raise my arms-my muscles will burn, my heart will race, and I become breathless. Could this be from just being out of shape... because I've been ill for a year or is it MS?"

I think you might need to add a few more answer options - how about
A and B?
A and C?
B and C?
All of the above?
None of the above?
Something else entirely?

Seriously, everything you list is a real possibility but it's going to be very difficult to figure this out.  That's why I asked about a primary care doc.  Much as we try to help, it seems to me you need a professional with broad medical knowledge who can question and examine you without a disease specific prejudice in mind.

Burning muscles can come from neuropathy, over-exertion or deconditioning.  When your heart and breathing are over-responding to things like squatting and bending over I begin to wonder about heart or circulation problems.  Even when related to MS those types of things can require a cardiologist for evaluation and treatment.

Please get this checked out and let us know what you find out.  Maybe you'll get away with nothing worse than some recommendations for a new work-out-to-build-up program.  We can never give up on whatever it takes to keep ourselves moving!

[byyygrace]

Thanks Kyle! I had a 3 day Solu-Medrol infusion the first of October. It made me not as tired but that was it as far as good effects from it-I really hope to never have to do that again. I hated how it made me feel and I'm still working off the 15 pounds I gained! LOL

I'm thankful for the Neuro I have though-he has been very patient and spent tons of time with me, sometimes hours! I have seen him every month since August last year. He's 2 1/2 hours away though so I'm glad that I don't go back till March. My old neuro I saw 5 months in a row for 5 minutes or so told me I couldn't possibly be having pain, numbness, and tingling since my MRI's were clear!

When you asked earlier about the burning in the muscles I'm using, did you have some thoughts on that?

Colin

[kwarendorf]

If you have actin lesions, and symptoms, has there been any discussion about treating the current inflammation with high dose steroids, i.e. SoluMedrol?

There sre two parts to attacking MS, the first is to get current symptoms/inflammation under control. The second, long term, part of the program are DMD's designed to prevent future inflamation.

As to descrepancies between what he says and what the report says, he's been readin those reports longer than you. I'd side with him :-)

Kyle

[byyygrace]

I have no O-bands and some of my symptoms seem atypical(my opinion, not his). There has been no remitting (symptoms can change from day to day but some are constant) since last February.

He told me the reason he was so anxious to start the DMD was because I had several active spinal lesions. I had thought that when the MRI was done in Sept. that nothing was active. I just pulled out the report and it says "not currently active".

He is an MS specialist as well a board certified neuroimager so he is the one that interpreted my MRI. I see everyone on here saying how many lesions they have and all I know is that I was told "you have a few lesions on your brain and several on your spine". I really can't make heads or tails of the report.

I guess I'm just so wishing that this could be something other than MS! I can't imagine feeling like this for the rest of my life.

Colin

[kwarendorf]

"pieces of your brain are floating in your spinal fluid"

That's informative. Did he provide any further wisdom?  MS symptoms are typically, but not always, unilateral...

Not so lonely, we've all been there and and are all here :-)

Kyle

[byyygrace]

It is on both sides with the muscles I'm using at the time. I have had bilateral pain from the beginning, eg. burning, tingling, etc. but it is not usually the same on both sides or at the same spots.

I have several spinal lesions. I have starting taking Aubagio about 6 weeks ago. Could it be a side effect from that? I have my first liver function test today.

I've never had any back problems, but I could look into that. I saw my neuro last Thursday and he really didn't respond when I told him what was happening except to say when I was ready he could set me up with neuropyshc evaluation but that I should continue to work as long as I can. (cog problems too)

I think I may be in the denial stage-I have a thyroid tumor and had researched thyroid disorders and convinced myself that that is what is wrong with me. When I mentioned this, he seemed exasperated! He told me my thyroid levels are fine but that "pieces of your brain are floating in your spinal fluid".

Thanks for your responses-it's lonely out here!

Colin

[kwarendorf]

Are the muscles that burn the ones you are using at the time, i.e. if you walk fast do your legs burn? If you raise your arms do your arm muscles burn? As Tammy asked, is the burning on both sides?

Kyle

[maxthecat43]

Hi Colin,

Unfortunately, having ms doesn't keep us from having other issues...  This pain (if it's bilateral) sounds more like a pinched nerve in your back.  If it is a nerve pinch, a chiropractor can take care of it in one visit.  I had this happen last year too.  All of the symptoms you mention could be due to this...  

If it's only on one side, I'd put in a call to your neurologist's office.

Tammy