Need help figuring out next step for diagnosis - Multiple Sclerosis Message Board

izzybur34 · 04-19-2008, 09:05 PM

Hi everyone I am new to the boards and have had pain and fatigue for about 10 years. I was initially diagnosed with fibromyalgia and was given pain meds, which have allowed me to function with some normalcy. However, the severity of my symptoms keeps progressing and I also have flare ups, where the pain and fatigue will be so bad that the meds wont help. This can happen for a few hours to a few weeks.
Last year I saw another doc that swore I had lyme disease, though the tests were not conclusive and he sent me for an MRI of the brain because that would show indication of lyme infection. The MRI showed two lessions. To make a long story short, I stopped seeing that doctor after a year of being on antibiotics without getting better. My PCP then received the records and told me that the lesions could also be consistant with MS.
I just went to a neuro and had an MRI of the brain and cervical spine with contrast, which showed that the lessions had stayed the same. He said in his experience it is unlikely to be MS, but a LP would be needed to confirm that.
My question to you guys is: in your experience, are there people that have the LP even though the MRI is "normal". Do you think that going for the LP is worth it.
I would love to have a diagnosis and find out why I am always in pain and so tired. the only thing that has been positive in the gazillion tests that have been done was the EBV, which the neuro just put me on Valtrex for. He also gave me amantadine for the fatigue, which is not working. I also take tramadol for the pain and lyrica.
Sorry for the long post, any advice would be greatly appreciated.

Bearygood · 04-19-2008, 09:18 PM

Hi, izzy, and welcome. Just a few comments...

First, in the year's time since I have been dxed with MS I've seen people who have also been dxed although their initial dx was fibromyalgia. Regarding Lyme, it's also a very intricate disease and certainly not one antibiotic fits all. Don't know what type of doctor you saw but I hope it was an LLMD. For more info. on proper testing you can visit the Lyme board here -- there are many knowledgable people.

Lyme can mimic MS for sure and that's another thing I've seen. People who have been dxed with Lyme and come to find out they have MS AND vice versa. The lesions and sx can be very similar. That said, MS lesions usually have certain characteristics like shape and location. But, sometimes it can be tricky. There are definitely cases of atypical MS where it is NOT textbook. I know you said you saw a neuro but it might be a good idea to go to an MS specialist. Re: the lesions staying the same, that certainly is not reason unto itself to believe it's not MS. (And if it IS MS, that's a good thing -- that's what we all want, for our lesion load to remain stable.)

FYI, other things can cause lesions and because you mentioned fatigue you should know that one of them is a B12 deficiency. Don't know if you've ever been tested (or adequately tested) for that but if not, you should be.

To a large extent, an MS dx is one of exclusion. You do have to usually fit what's known as the McDonald Criteria for a formal dx but even then, all the other tests should be run to make sure it's not an MS mimic.

Bearygood · 04-19-2008, 09:20 PM

Forgot to mention that not all MS patients will have a positive LP. For many, this is just not an easy disease to dx!

Bearygood · 04-19-2008, 09:23 PM

...and, although it is not proven conclusively, it is believed by many that there is a connection between EBV and MS. They really don't know what causes MS and it might even turn out to be different things in different people, not just one cause. But, EBV is something that comes up often. That said, not everyone with EBV gets MS.

izzybur34 · 04-19-2008, 09:27 PM

Quote:

Originally Posted by Bearygood

Forgot to mention that not all MS patients will have a positive LP. For many, this is just not an easy disease to dx!

Thanks for your responses. The neuro I am seeing is an MS specialist at the MS center of New England. I have been tested for B12 (and about 13 dozen other things), but I am not sure what you mean by adequately.

So, if I have a normal MRI and a neative LP, where would they go from there?