Not Fibro---wrong diagnosis!!

hi sueg - im sorry to hear that....

Did your MRI come back with lesions? I had an MRI but no lesions, just a cyst.

I know people with MS and they cope with it very well, some I know also continue to work at least now you have a definitive answer...There are lots of tests I havent had done, Lyme is one of them...its no so popular to test for it here in UK, even though I live in a woody area.

Don't despair sueg. Go to amazon and look at some of the diet and cookbooks for MS.
Dr Swank is one. Many women have found remission by following Dr Swank's recommendations and have had wonderful quality lives for years -- and stayed free of symptoms.

Also, my son has a good friend from college whose wife had an illness as you describe with seizures also. They had her on multiple meds that were making her an invalid and putting her in a wheelchair.
She is a biologist by profession, so she started reading into diet and did a complete diet overhaul. She lost nearly 100 pounds and was training for a triathlon in one year. She takes no meds and as long as she subscribes to the diet, she keeps herself in remission. She is very fit now.

No one knows why saturated fat aggravates nerve sheaths and contributes to MS, but saturated fat is one thing you need to cut based on Dr Swank's findings with his patients. You limit fats to vegetable oils, a certain amount per day. There are other aspects to the diet, so if you're interested, you'll need to visit the web site or check out amazon as well.

http://www.swankmsdiet.org

Sorry for your news, though glad you know what it is you are dealing with! My neuro, internist and rheumatologist all say fibro (and have tested for everything!)...but they also say it's fibro for now. Until it is something else, I guess. Crazy. Hopefully your treatment will prove to be more effective now?

Thanks so much for all your replies! I'll bet there are a lot of people out there with no answers at all. So this is good to have some. I had been wondering for so long why I was in bed so much and just wiped out. But could not get much from my Rheumatologist--he just said the SLE is not back. So it must be Fibro. It took the addition of symptoms like numbness, weakness and headaches to finally ring some bells to send me on to the Neuro doc---and that was my idea!! My Rheumie said afterward he thought there would be nothing wrong showing up on the results. What a guy!!

The Brain Scan showed white spots and then I went for a Spinal Tap. That shows areas of 'demyelination similar to MS'

And I will have another test--an EMG at the end of the week. The Neurologist will do that test and I can ask him all the questions about this illness and how it can be treated.

This is a different road than I thought I would have!!

 

This does make me think too. I haven't seen a rheumy in about 10 years. I have been wondering about some symptoms myself. I am sorry to hear about your diagnoses. I am glad you push through until you got an answer.

Sueg, I'm really proud of you for taking initiative in the case of your health. The docs may look at us like hysterical hypochondriacs, but better safe than sorry, I think.. especially when its something that is enduring and not letting up. Good for you for being responsible for yourself, and pressing your doctors to keep searching for answers even when they were content not to.

I wish you the best. Please feel free to keep us updated on the FM board.

And also, your post reminds me: I believe that this board probably gathers quite a variety of people dealing with overlapping and varying illnesses related to our FM-like illnesses. I've been realizing this since having hung out on this board for a while. Some of us deal with food sensitivities, others don't. Some of us have Lupus. Others don't. Some of us have CFS issues, others not as much. We really do vary quite a lot; we are not cookie-cutter replicas of a each other, and, in my opinion, it would behoove all of us to consider that we may have varying health conditions influencing our FM pain which may or may not have been revealed to us. None the less, we are unified in some of our struggles and can find help from one another, even in the cases where we may have been misdiagnosed.

Thanks for reminding me to remain vigilant in my search.

I have been tested for it, twice once when pregnant (standard) and also i demanded one when all this kicked off, just in case. I know which article you mean (i think) and it scared me too...but i can certainly say I dont have it and still have fibromyalgia

Symptoms of fibro are very similar to MS, lupus, Lyme disease, rheumatoid arthritis, and other things.  They are listed in What Else Could It Be in Fibro 101.  Also, you can have MS AND fibro or lupus AND fibro...just ask Joy about that one, etc.  So perhaps your initial diagnosis was correct but since you seem to be getting worse, it was great that you got checked out further since fibro isn't a progressive illness. 

 

Give yourself a big pat on the back for being your own advocate.  That is so important with these illnesses...actually any illness.  Doctors are human and make mistakes and, let's face it.  No one knows our bodies better than we do and no one cares more about our bodies than we do.  I'm glad you are getting some answers so you can get proper help.  Let us know what you find out because we really do care about you.

 

Sherrine