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Muscle Disorder


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#1 CraigR

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Posted 30 June 2012 - 03:41 PM

I've developed a severe muscle disorder in my legs over the past 2 months. Following a cold with a persistent cough, I developed severe back pain that soon became great leg pain - especially when moving then (little pain when resting). My rheumatologist suspected myositis, but muscle enzyme tests came back normal. I've had myalgia/myositis issues in the past, but of the upper body.

At the worst, It took heavy pain relievers and 80 mg of prednisone a day just to make it possible to get out of a chair. All tests were normal except ESR ( erythrocyte sedimentation rate) and CRP (C-reactive protein) which were highly elevated. My rheumatologist thinks the muscle enzyme test may have been falsely negative due to taking prednisone. I have reduced medication since that time.

The critical stage has passed, but I require a walker to get around, due to weakness and ongoing inflammation and it doesn't seem to be improving. I would like to find out who might be an expert on such matters. Light exercise does not seem helpful since it increases pain.

My history is slow-onset sclero with Sjogren's and pulmonary hypertension. My latest autoimmine panel oddly did not show any sclero antibodies, but showed both Sjogren's antibodies.

Anybody had anything similar?

Craig

#2 Joelf

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Posted 30 June 2012 - 11:32 PM

Hi Craig,

I'm so sorry to hear that you've been suffering such a lot of pain recently. I'm afraid I have no experience of similar symptoms,(thankfully!) so can't advise you, but I expect we will have other members who may be able to give you more first hand advice.

I do hope your symptoms very soon improve and that you will feel much better.

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#3 Shelley Ensz

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Posted 02 July 2012 - 05:35 PM

Hi Craig,

I'm very sorry that the weakness is still lingering for you and that it hasn't resolved. Please keep in mind that I'm not a doctor and have no medical training at all and take everything I say with a grain of salt.

By any chance, have you consulted a neurologist about this yet?

We've had several members with overlaps of things like Scleroderma and Multiple Sclerosis, as well as Myastenia Gravis (and, of course, Dermatomyositis and Polymyositis). I might be confused, but I think I remember reading once that there is sometimes and association between Sjogren's and Myastenia Gravis, too. Myastenia Gravis tends to get better with rest but worsen with exercise.

In any event, if your scleroderma expert is at a loss to explain it, then it may serve you well to have your medical team look in other directions. Miocean had some severe leg weakness due to anti-cholesterol medications. However I would guess you've already looked into all your med side effects long before now.

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Shelley Ensz
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#4 cantuse

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Posted 03 July 2012 - 01:04 PM

I'm hardly an expert... I'm still waiting on a proper diagnosis.

But I can definitely relate to the leg pain. I've been having chronic leg pain daily for six months and before that I can remember painful episodes going back at least six years. I should also add that I've been dealing with meralgia paresthetica in my thighs for about that long as well. At least twice the pain was so sharp and acute, the doctors thought I had a thrombosis. As a result, I've had MRIs, X-rays, venous and arterial ultrasounds and even something called a 'bone scan'. All of which turned up nothing to explain my symptoms.

Recently after tripping on the floor in my house and breaking my foot I decided enough was enough and I pushed my doctors for some follow ups. More MRIs of my legs and spine followed and all came back normal for my age (mid-thirties). The blood work however work was positive for ANA/SCL-70. Now I'm just waiting to start working with the rheumatologist and figure this out.

I'm also dealing with absolutely excruciating shoulder pain that has similarly refused easy diagnosis. It's as if I absolutely destroyed my shoulder playing sports, but I've done nothing of the sort. Now my shoulder hurts just using a computer or doing simple housework.

To be fair there are other symptoms I experience that lead me to believe I might have SD, but that's besides the point in this topic. :D

From what I've read there seems to be either a significant similarity or co-morbidity between scleroderma and polymyositis; chief among the symptoms of polymyositis being muscle weakness and pain particularly of the pelvic girdle or upper thigh and the shoulders. You may want to review the information out there on it, since the article specifically cites pain in the hip extensors making rising from a chair difficult, which strongly resembles your story.

#5 judyt

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Posted 03 July 2012 - 02:25 PM

I think I can join in on this topic of muscle weakness, although I don't get pain as such. For many, many years my legs have let me down (not literally although it feels like it sometimes). As a teenager I used to swim competitively, then in my 20's the Sclero symptoms started and I began to have trouble climbing stairs and hills. Now that I am getting towards being ancient!!! I find the stairs in the house make life unmanageable and we are in the throes of moving to a single level home.

As is usual in my experience, when I talk about it to doctors I just get the shrugged shoulders treatment. Then I think, that we are making allowances for my problems so I might just as well live with it.

If I had constant pain and was young like you guys I might be more motivated to find a reason. Hope for your sakes you do get some answers it must be sooooo frustrating.

Best wishes
JudyT

#6 Teatime

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Posted 05 July 2012 - 01:28 PM

It sounds to me like it could possibly be sciatica, and a vertebra-nerve problem. I know it sounds odd but I know a couple of people who have had slipped/herniated disks in the low back because of a bad cough. I would go to an internist and discuss having a neurologist take a look. Sometimes physical therapy does the trick and sometimes you need surgery. The sooner you address it, the more likely it will heal well.

I have degenerative disk issues so I've had a lot of experience with the type of symptoms you're describing. I've had 3 back surgeries, all successful. I just had my third six weeks ago and am recuperating nicely. Here's the thing -- since we have some serious autoimmune diseases, the tendency is to look immediately in that direction when pain starts. I'm happy that I have a really good, caring internist who says, yep, you have serious, incurable diseases but we need to look beyond those at other possibilities, too. There can be common problems that can actually be FIXED!

Sure, you might have some of the other diseases and problems you mentioned but I'd perhaps consider sciatica first. If you catch it early, conservative, non-surgical measures might put it right! Good luck!

#7 CraigR

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Posted 09 July 2012 - 03:15 PM

Thanks for the info. I see my rheumatologist tomorrow and this is good for discussion. I am slowly improving (but not nearly fast enough...) I don't know that a nerve disorder such as sciatica would cause high inflammation (my only positive tests were a very high SED rate and high CRP), which points more toward MS or MG. The symptoms sound much like MG, but were legs only. Oddly, I have had attacks in my upper body (to the point of pain making breathing difficult), but never upper and lower body at the same time.

Craig

#8 Shelley Ensz

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Posted 10 July 2012 - 05:26 PM

Craig, you may occasionally want to remind both yourself and your doctors that the classic textbook cases are only for education and that in real life they seldom appear as neatly and precisely as a textbook outline -- especially when it comes to persnickety autoimmune diseases.

So look for the common ground. Ask your doctor what ailment(s) would most likely account for the vast majority (or the most important) of your symptoms, and see if any of them can be entirely ruled out, to narrow the playing field.

Don't be shy on asking for a referral to another specialist, either, as it may be most helpful for them to see you before this particular episode has entirely resolved.

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Shelley Ensz
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#9 CraigR

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Posted 15 July 2012 - 11:53 AM

After my appointment on 7-10 I had more bloodwork that was still negative for muscle enzyme and high sed and CRP rates, though there was improvement. I am setting up an appointment with a neurologist. There has been improvement, but too slow for me!

For a quite a while I've suspected some sort of neurological damage from cancer chemotherapy, since my balance was so bad that I required a cane, in spite of a great deal of exercise

So we will see.

Craig

#10 Shelley Ensz

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Posted 17 July 2012 - 12:32 PM

Hi Craig,

When is your neurologist appointment? I sure hope they are able to identify what's going on.

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Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#11 debonair susie

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Posted 19 July 2012 - 10:30 AM

Hi Craig,

When I read "muscle enzyme" in your last post, my "ears perked up"; I see my rheumatologist within the next couple of weeks and am scheduled for labs (as always) prior to the appointment, so had planned to ask for muscle enzymes to be looked at as well.

I feel so, for you, Craig; like those who have been posting on your thread here, I too, am anxious to see what you found out with your appointment.

Inflammation sure can throw our bodies into a "tizzy" :emoticon-crying-kleenex: . Fingers crossed all of this can be alleviated for you.
Special Hugs,

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