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1549643 tn?1495759353

being tested for MS

I have widespread tingling like crawling sensations (hands, arms, fingers, legs, feet, toes, back. face, and sometimes on my abdomen). I have a severe form of chronic fatigue. Urinary frequency, sometimes with incontinence, widespread muscle pain, muscle spasms, sometimes get muscle twitches, a little joint pain. Really bad back and neck pain with burning sensations. Red rash on chest worsens with sun exposure. Intermittent generalized muscle weakness (symptoms started 17 yrs ago)

Positive ANA, RNP, been diagnosed with undifferientated connective tissue disorder, and my PCP thinks it's just fibromyalgia, he basically thinks I hurt without reason. My inflammatory markers are normal so I guess that's why. Had lumbar puncture last week to test for MS.

I don't think I have MS but I must have symptoms for my neurologist to be checking it out. I'm kind of wondering if maybe my spine is causing the crawling sensations. Been told it's too widespread to be from my spine, but I just don't know what to think.

Can you all share symptoms? Thanks.

3 Responses
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667078 tn?1316000935
MS symptoms are mostly asymetrical. In my case it was the left side of my body that had symptoms first. They could tell from my reflexes I was not getting signals to the left side. I get symptoms on both sides but not equally. It might be my left hand and right foot. Have they done any MRIs? Joint pain or rashes are not a part of MS. I do not know what your Neurologist is seeing which points to MS, but he is a Doctor and has more information. There are many illnesses which mimic MS.  You might look at the health page at right of the screen there is a lot of general information on MS and diagnosis.

It is so hard to get a diagnoses for most things. The human body is complicated to start with. Then the medical field is so specialized you basically have to know whats wrong with you to get to the right specialist. These doctors only seem to be looking at you in regards to their specialty. If your problem does not fall into their narrow scope it can be a wasted trip. Most diagnosing is a process of elimination. If you are lucky you see the right doctor and they find out what is wrong quickly. Most people have lots of tests and go from specialist to specialist. It took me 46 years to be diagnosed with MS. If you have more than one health problem it makes it even more difficult.

It takes patience to deal with the medical profession. I luckily have a good Primary Care. She caught my MS when I did not even know I had a problem. It still took two years going to Neurologist to get a diagnosis.

The main thing is to get your symptoms treated. I thought a diagnosis was most important. Now I know that even with out a diagnosis they can treat symptoms. My primary care still does more for me than the Specialists. There are some medical conditions the Doctors can't diagnose. I worked over 20 years was a Veterinary assistant. Some times the Vet never really knew what was wrong with an animal. They simply treated symptoms.

I know it it is frustrating. We want to be fixed. More importantly we want validation. We want to know what is going on with us is real. Just because a Doctor can't diagnose it does not mean it is not real. There is still a lot about the human body Medical Science does not understand. We are complicated beings.

Alex
Helpful - 0
1549643 tn?1495759353
If that's the case, why is it that some doctors I've been to won't diagnose it as a connective tissue disorder without elevated inflammatory markers? I go to one rheumatologist that says no, another that says I have undifferientated connective tissue disorder, my PCP says fibromyalgia, my neuro says UCTD. And I'm just getting aggrivated. I want a for sure answer, getting tired of the XXX..
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1756321 tn?1547095325
"A positive result for RNP antibodies is consistent with a connective tissue disease. Although strongly associated with connective tissue diseases, RNP antibodies are not considered a "marker" for any particular disease except in the following situation: when found in isolation (ie, dsDNA antibodies and Sm antibodies are not detectable), a positive result for RNP antibodies is consistent with the diagnosis of mixed connective tissue disease."

Excerpt from Mayo Clinic Medical Laboratories - RNP Antibodies, IgG, Serum.
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