Discussions By Condition: I cannot get a diagnosis.


Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: hopelessinhawaii
  • July 14, 2010
  • 11:10 PM


On 12/31/07 after 5 hours of standing on my feet I felt numbness in me toes, I went home and put my feet up. Went back to work next day after 8 hrs. I was numb from waist down. Went to the ER. and was admitted. Over the next 3days a MRI and test were done. I was told that she thought I had MS due to the numbness and a lesion in the MRI. She referred me to a Neurologist. He said that he did not think I had MS because I did not have any of the normal symptoms but, did say that he was referring me to a Nero. Surgeon because, I had a disk pushing on my spinal corn in my neck and that it was very bad. I went to see the surgeon who did a C 5-6 fusion on my neck. All went well I left the next day. Everything seemed to be good until a few months later I started feeling pain all over my body and it seems to run along my bones and around my joints from head to toe. The pain level is about 2 at this time. I was sent to a Reumatologist who put me on Gabapentin (DID NOTHING) He thought I might have fibro myalga? Went to another Neurologist who said pain is caused by MS and put me on Hydrocodone 10/650 1 tab every 4 to 6 hrs. helped with the pain. put me on Copaxone daily inj. Before I started meds I went to Mayo clinic for second opinion. Another MRI and more lesions but still no symptoms all other test were normal. But also said No pain with MS unless lesions were in the spine and I had none. I started Copaxone inj. and after 6 months of treatment took another MRI and all lesions have gone. (meds are for helping to stop the progress of new lesions) My pain level has gone up to about 8, I take 2 10/650 every 4 to 6 and my hair has been falling out (A LOT) people are asking if I'm balding. My skin has become very dry along with my hair and eyes. I use top of the line products/no soaps/no hair dryer/no hot iron. I live in tropical weather Hawaii, lots of moisture. I moved here 3 yrs. ago from no. California. My heart beats fast for no reason and I was giving a stress test with dye inj. and was told that I have a electric problem but was fine not to worry. I have low pulse as well. I've been tested for parasites, thyroid, arthritis all normal. The whites of my eyes get red as I'm looking at them and last anywhere from a few min. to a day. As if blood is going into then out. Blood pressure is fine I check daily. Also I've had heat sensitivity for about 5 years but never thought anything about it. It's getting worse. The Neurologist says that none of my symptoms other then the lesion that I had is MS but has no answer. It is hard to find a doctor here in Hawaii and a good one seems impossible. I'm ready to give up don't know what to do? PLEASE HELP! any ideas? I'm a 44 yr. female

Reply Flag this Discussion

1 Replies:

  • MS people do have issues with heat sensitivity. I know someone with MS and she's had a hard time finding good doctors, she has one tell her one thing and another tell her another thing. I strongly suggest to you to join a good online MS support group so you can learn more about the illness. I know my MS friend gets sore legs and her lesions are just in her brain. You may have what is called "Atypical MS" if it isnt fitting the normal MS picture. Sounds like you could have Sjogrens syndrome with whatever you have.. it often coexists with autoimmune issues. Sjogren's will cause dryness .. dry eyes and dry skin. You may need treatment for it eg eye drops (see your doctor about it). The pain level is about 2 at this time. I was sent to a Reumatologist who put me on Gabapentin (DID NOTHING) He thought I might have fibro myalga? Its hard to say what he was thinking when he did that. Its used for neuropathic pain .. and for MS pain!!... it can also be used in fibromyalgia.
    taniaaust1 2267 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.