No Diagnosis 13 years so far
An_251663 posted:
I have been suffering from symptoms of MS for at least 13 years! In 2005 I went acroos the United Ststes to meet with one of the top Doctors who specialize in MS and she said although Ihave alot of the signs she did not feel I had MS because I had no brain lesions or other tests that would prove a diagnosis. As a matter of fact she felt it was Conversion disorder. Well, over the past few years of suffering my symptoms have gotten worse and I now have brain lesions. The Neurologist I now see said the lesions look like MS but because my spinal tap came out clean he could not treat me for MS. This year has been the worst in my cylcle so far with the syptoms being so unbsrable at times I literally want to die! I want to know if anyone has experienced this from their doctors and if their is some recommendation as to how to be diagnosed so I can stop suffering!
hackwriter responded:
Dear Anon,

My advice is to seek out another neurologist/MS specialist for a third opinion. Though the disease is hard to diagnose and can sometimes take years, you'll find that doctors all follow their own peculiar diagnostic criteria. In other words, you might have two doctors look at the same test results and one would give you the diagnosis while the other would not.

A brain MRI alone is not sufficient. Many neurologists will only order a brain MRI, and if it's clean, they will rule out MS. However, diagnostic tests for MS should always include a spine MRI; many of us have only spine lesions in the early stages (myself included).

What's more, it is possible to get an MS diagnosis without a positive LP. Though the majority of us are positive for O-bands, about 10-15% of us are not. It simply depends on the doctor and how much emphasis they place on that test in relation to your MRI results, clinical exams, and history of symptoms. There is not one definitive test for MS, but rather a determination after everything else has been ruled out and your collection of tests, exams, and history point to MS.

In addition, you can take medications for your symptoms without having a diagnosis. If you suffer from neuropathic pain or discomfort (burning, creepy-crawlies and other odd sensations), muscle spasms, fatigue, dizziness, bladder/bowel dysfunction, depression/anxiety, poor sleep, and migraines, to name a few, there are drugs that will make you more comfortable and improve your quality of life.

For these, tell your GP or neurologist about your symptoms and ask them to recommend medications.

Hope this helps.

meaghan00704 replied to hackwriter's response:
Thank you Kim! I have been told by my husband for a long time now, but he was diagnosed with pancreatic cancer last Feb. and I do not have the money to go to another specialist. I have asked my primary to help, but he says he is not a specialist. I feel like just giving up sometimes! This past week I believe my cycle finally ended as I have been sypmtom fe=ree for abut 5 days now. This was the longest and worst cycle I have experienced so far. But again thank you for your response!