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undiagnosed could it be a form of MD?

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Old 02-21-2007, 01:53 PM   #1
Join Date: Feb 2007
Location: Coventry, RI, USA
Posts: 5
maxrabbit HB User
undiagnosed could it be a form of MD?

I have had foot/calf and hand/lower arm pain for 2+ years. I cannot do any activity involving my hands or feet for a long periods of time. With increased use comes increased pain and "weakness". The weakness could not be called profound but I get very clumsy and my grip is weakened. On a "good" day I start with little pain and can get through the day running whatever errands I need to get done with only a little pain at the end of the day. On a good day I could probably spend 3 hours walking slowly at the zoo and the pain at the end of the day would be tolerable (with advil and rest all afternoon), I could not do a trip to the zoo in the morning and then run errands in the afternoon. On a "bad" day I start out in pain (hands and feet) and cannot do much during the day, the pain at night interferes with my falling asleep.

More recently I have been thinking my neck muscles are getting fatigued but it could be because of the lack of true exercise I have been able to do. If I push myself on a good day, I am WIPED out the next day and the extra pain lasts for days.

The pain cycles in a very consistent episodic way (not tied to menstrual cycle) with the beginning of the cycle being lower pain levels, more stamina. Over 2-3 months the pain gradually increases and peaks with 2-3 weeks of pain that interferes with my daily activties. The pain drops dramatically and fairly suddenly when "good phase" begins again.

I cannot wear any shoes other than hard soled very supportive shoes. I have found Birkenstocks work best for me. If I wear tennis shoes, even with high arch insoles, the pain increases.

I also have had sinus issues since my daughter was born, for which I started taking claritin, not sure if sinus stuff is related. I also have noticed a sun sensitivity. I get severe headaches with bright sun exposure and dehydrate and burn easily in the sun. With dark sunglasses and hats I have less headaches and I have learned to drink LOTS of water.

I have seen an endocrinologist, rheumatologist, podiatrist and neurologist, and infectious disease specialist, in addition to my primary care physician.

I am currently taking a low dose of synthroid (tried higher and it didn't help), and Cymbalta (helped with generalized fatigue and mood issues caused by the chronic pain). I was taking birth control but had my tubes tied, I have seen no change in symptoms since I stopped taking birth control. I have found the advil nighttime helps me get to sleep. ibuprofin in my drug of choice to help with the pain. I take GNC multivitamins, calcium, omega complex, aciphillodosis(sp?).

Sleep study revealed PLMD but I think that is more of symptom of what is going on than a cause. I haven't tried drugs for that yet. Nerve conduction study showed no current nerve deterioration. MRI showed small pituitary tumor but all hormone levels are within normal range. I had very slightly elevated ana and cpk but nothing of diagnostic value.

I felt physically miserable during my pregnancies and had major problems with my hips. During my second pregnancy I wore a belt the entire pregnancy to hold my hips together because otherwise they would spread apart making it difficult to walk. I even had to wear it to sleep at night. Not sure if that is related.

ruled out:

Due to the lack of diagnosis my rheumatologist feels that this could be a transient condition that will resolve on its own. Other options: I am showing "non-standard" symptoms for a known condition, or suffering from a more rare condition that I haven't been tested for.

My rheumalogist felt exploring MD wasn't warranted because of the pain and the cyclical nature of it, but the muscle fatigue and resulting weakness make me wonder. Could this be an adult onset MD? Anyone have any similar experiences?

Any ideas? I would be happy to provide more information if needed.

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Old 04-04-2007, 09:47 AM   #2
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Join Date: Apr 2007
Location: miramar,fl
Posts: 15
Michelle71 HB User
Re: undiagnosed could it be a form of MD?

I have polymiositis, but my advice is to try another neurologist. Call the MDA near you and see one of their doctors. It doesn't hurt. I've been to them and 2 other neurologists and my current neuro is sending me to another neuro in Ohio. Don't stop till you find out what it is. The sooner the better.
Good luck

Old 05-31-2007, 08:07 PM   #3
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Join Date: May 2007
Location: Canada
Posts: 11
pepito75 HB User
Re: undiagnosed could it be a form of MD?

Have you been thoroughly checked for hyperparathyroidism ? I just got diagnosed with this and have some similar symptoms - foot pain, cramping, muscle pain, aching, bone pain, and elevated cpk (in the 300-500 range, which is not too high apparently).

Also a lot of your problems sound like hypothyroidism, as in the sinus and foot pain.

There's lots of info about hyperparathyroidism on the net - check out [url][/url] .

Hope you get some relief soon.

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