Hi Sally:

You are on a mission - you need answers.

MS is a dx of exclusion. A hiatus hernia (very common) is not a symptom of MS.

Is your physician supportive - does he/she take you seriously? Have you had a battery of blood tests to rule out other possibilities such as glucose intolerance or B12 etc?

With progressive symptoms for years, I finally found a neuro who, while looking for answers (still don't have a dx other than possible MS) was committed to giving me a quality of life. My quality of life went from about 10% to 90% with the right meds. My clinical signs are blurred/double vision, neurogenic bladder, spasticity, neuropathic pain, fatigue and weakness.
The neuro exam shows corpus collosum atrophy, cerebral atrophy, nystagmus, hyperreflexia, diminished sensation, gait problems (I use a cane when necessary). What a difference the right meds make. While it isn't perfect, I have my life back most of the time.

If I do have a 'set-back' it usually lasts 24 or more hours. This last one knocked me back for four weeks and recovery has been slow. That's the worst about the progressive part, one just doesn't bounce back like we did in our 20's and 30's when the symptoms were milder and we were too busy with kids and jobs to really notice.

Because I am glucose intolerant I eat 5 small meals a day. Can't say it helps subjectively, but objectively it is the appropriate thing to do.

Good luck - keep us posted.

SallyB - I understand all of your frustrations. I, too, question the neuro you went to but at least he has ordered all of the testing. Don't you just get tired of all the tests????? I guess we are in about the same stage of being diagnosed. I had my brain and spinal MRI's yesterday.

TO ALL OF THE REST OF YOU - Thank you for sharing your knowledge and you are all sooooo friendly. When I made the comment about my age (53) being old, I meant that in reference to being old for just being diagnosed with MS. I was reading up and read that "typically" MS is diagnosed when a person is in their late 20's and 30's. It is very nice to find a group of "perfectly aged" people. (Jeez, now we sound like beef.)

I will let you know how the MRI's turn out. I expect to hear Monday/Tuesday.

Thanks again for your kindness. It is appreciated more than you know...

nancy-h

The idiot neuro set me up for several tests. But, my rheum intelligently added the B-12 blood test, and one other that I can't read. She also added full MRI on my spine since it has been years shince I had one. I am so thankful for my new rheum. If anybody will get to the bottom of my problems, it will be her...or my new regular doc. The regular doc is the one who found the lesions on my brain. I had gone to the neuro before I met her, and he just sent me on to other docs. Sounds as if he has his quota on patients. To say I am disgusted is a small thing. I am beginning to get downright mad!!!

Hey, Nancy. My symptoms became pronounced when I was about 37 or 38. Does that count? Here it is 12-13 years later, and I am still on the Merry-Go-Round. As far a bood tests go, the creases in my arms are beginning to look like a heroin addicts!!! Good luck to you.

heard of this before, "As far as insurance goes, all I have is Medicare. Would Medicare call the shots on testing like other insurance companies would? Do they put MS patient quotas on the docs???

Is there materials on this somewhere? On both insurance and Medicare that is?

Had the lumbar puncture a couple of days ago. Kinda hard to hurt somebody that deals with chronic pain daily anyway. Wasn't so bad. Have a few other tests within the next few days. I will let y'all know when the doc tells me anything...MS or stroke or what?

sally