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Cannot wait for diagnosis to stop pain

Posted: Thu Apr 03, 2014 7:47 pm
by Hadenough
Hi everyone and thank you in anticipation for reading my post. Last July I suffered a bad flu virus and about two weeks later started getting strange symptoms. I was diagnosed with fibromyalgia and after finally getting to see a pain specialist early this year, I was told that he thought that was an incorrect diagnosis and that I needed to see a neurologist. Two previous rheumatologist discharged me as they said there was nothing they could do for me. I was unable to handle the Lyrica. I have now seen the neurologist and all blood tests came back normal. I am waiting for MRI results.
My problem is that since July I have been in excruciating pain in legs, back and shoulders, my legs wobble, I go to the toilet 100 times a day, suffer from either constipation or diarrhea , terrible migraines, blurry vision, body trembles, weird sensations ie. itching, crawling, water running down legs, burning. Back in august, I lost my eyesight for a few minutes. Nothing has got any better over time. My reflexes were hyper on one side, and my right side was weak. I also suffer from insomnia and extreme fatigue. My doctor doesn't really offer any relief and tells me to hang in there, I have been hanging I there for months without any relief, I cry to myself at night when the pain is so unbearable. I don't know what to do. I still have three weeks till my net neuro exam, both my neuro and pain doctor saidd it sounded like ms. Any suggestions please, would be much appreciated. I have the vitamins, eat healthy and rest as much as possible. Thank you.

Re: Cannot wait for diagnosis to stop pain

Posted: Thu Apr 03, 2014 8:22 pm
by lyndacarol
Hadenough wrote:Hi everyone and thank you in anticipation for reading my post. Last July I suffered a bad flu virus and about two weeks later started getting strange symptoms. I was diagnosed with fibromyalgia and after finally getting to see a pain specialist early this year, I was told that he thought that was an incorrect diagnosis and that I needed to see a neurologist. Two previous rheumatologist discharged me as they said there was nothing they could do for me. I was unable to handle the Lyrica. I have now seen the neurologist and all blood tests came back normal. I am waiting for MRI results.
My problem is that since July I have been in excruciating pain in legs, back and shoulders, my legs wobble, I go to the toilet 100 times a day, suffer from either constipation or diarrhea , terrible migraines, blurry vision, body trembles, weird sensations ie. itching, crawling, water running down legs, burning. Back in august, I lost my eyesight for a few minutes. Nothing has got any better over time. My reflexes were hyper on one side, and my right side was weak. I also suffer from insomnia and extreme fatigue. My doctor doesn't really offer any relief and tells me to hang in there, I have been hanging I there for months without any relief, I cry to myself at night when the pain is so unbearable. I don't know what to do. I still have three weeks till my net neuro exam, both my neuro and pain doctor saidd it sounded like ms. Any suggestions please, would be much appreciated. I have the vitamins, eat healthy and rest as much as possible. Thank you.
Welcome to ThisIsMS, Hadenough.

If the pain specialist thought the fibromyalgia diagnosis was incorrect, I think it would be appropriate to start over with your GP. When you say "all blood tests came back normal," I wonder if these blood tests included testing for vitamin B12

I encourage you to watch the following video: Everything You Want Your Doctor to Know about Vitamin B12

a 50-minute documentary from filmmaker Elissa Leonard, featuring Sally Pacholok, RN; her husband Jeffrey Stuart, D.O.; Lawrence Solomon, M.D., hematologist, Yale Medical School; Ralph Green, M.D., hematologist, UC Davis; Donald Jacobson PhD, Cleveland Clinic



The Framingham Offspring Study suggests 40% of Americans have suboptimal B12.


Or have you been tested for gluten sensitivity? It also shares many of the symptoms you listed.

Or have you been given a "fasting blood insulin test" – this is NOT the same as a glucose/blood sugar test which is used to diagnose diabetes. My personal, unique opinion is that excess insulin is responsible for my MS symptoms.

MS is an exclusionary diagnosis; it is made by ruling out other common possibilities first. The following suggestions come from the University of Chicago:

http://peripheralneuropathycenter.uchic ... #bloodtest
Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B
The problem is the same symptoms are common to many different conditions. All the best to you.

Re: Cannot wait for diagnosis to stop pain

Posted: Thu Apr 03, 2014 8:34 pm
by Hadenough
Hi lindacarol,
Thank you for you reply. Yes I have been tested for everything and all came back normal except for vitamin d, that is why my neuro is thinking ms. The problem is that he is away for another four weeks and I am struggling with the pain and had have no support from my go. I am at a loss at what to do.