Pain Symptoms ?

[coloradoman]

I am a 46 yr. old male and have been experiencing worsening symptoms for the past year. They began with extreme fatigue, low back pain, genital pain, and rectal pain. Througout the year I have gone to several local neurologist and other specialists, urologist, I have had colonoscopy, MRIs for lumbar/thorasic/brain and CT scan of my chest. The MRIs were without contrast. I have had two LP one initially with high protein 54mg/Dl and onn more recently at 44mg/Dl. Recently I had a full SensoriMotor Neuropathy Profile-xp (complete) MAG/Dual Antigen,Hu,GALOP,Sulfatide. I have consistent sexual dysfunction (for the past year). I have been married for 27 years and never had this problem. I have flare up of symptoms 1-3 days per week. On these bad days pain radiates out through my body. My hands become numb and the tips of my fingers  hurt when doing simple tasks, guitar, computer. The heals of my feet hurt when walking. At the end of these bad days I simply curl up in fetal position and wait it out. Late evening tends to be better. My current neurologist will do nothing more and suggests tertiary facility like Mayo. Mayo declined to offer me an appoinment. I am investigating other facilties Duke,Cleveland Clinic, etc. What can they offer me ? I no longer can run although I still walk several miles a day. None of the MRIs show nerve damage or compression I am told. Vigourous excercise seems to exascerbate. I currently taking Effexor XR/ 2x75mg/day and 50mg amitriptolene at night and Neurontine occasionally to help with bad days.

[CCF-Neuro-M.D.-CS]

Your testing has been very extensive. You have not mentioned an EMG, but I assume one was done. I can not predict what another consultant will order. At this point without taking your history, examining you, and reviewing your previous tests, I can not make specific recommendations. The Cleveland Clinic does have an E-medicine site which patients can access. It costs money, but you can have your files and history reviewed by one of our physicians, and then receive recommendations. You may wish to try something like this before making a trip. Good luck.

[coloradoman]

I forgot to add the following: During the bad days (especially lately) I have rib pain and hip pain which is hard to describe. Sore and achey (achy), feels like it's burning. My skin is more sensitive too, like it would feel after a sunburn. I should mention also that during the last LP ogcliclonal banding was done, (sent to Mayo labs) and tested negative. I am still able to work despite the pain. I still would much rather be working that staying at home. I take 800-1600mg of Ibuprofen a day.

[SherryDenice]

Let me know if you find out anything.  My skin hurts too!!

[missmoe]

I have been experiencing similar symptoms for years I have been told I have fibromyalgia.  About two years ago I was diagnosed with hypothyroidism.  Right now the doctor put me on prednisone and initially it helped but I am now showing a reaction.  There are days which I am imobilized and have sever pain throughout my body.   At times I can exercise but other times I am too drained.  I tend to do better when I do vitamins but the prednisone helped with the pain in my hands at first.