Fibromyalgia Community

My best friend thought she had MS as well, however, hers was not attributed to FM (even though symptoms are similar) her MRI/CT Scan also indicated something, therefore she had to have the spinal tap.

End result it was not MS as first thought, but it is a certain type of tumor. For now they will just monitor its growth. It has not grown in over 4 months so she put off surgery for now.

All her bloodwork came back normal.

Hi jennagale. I sure hope your sister's test goes well and comes out negative.

I went through all that MS testing about 3 years ago and the results were "possible MS" as it is with so many people with MS symptoms. It seems there are overlapping symptoms with FM and lots of the autoimmune diseases. It makes it difficult to diagnose. Meanwhile, we wait...

I hope the best for you and your sister. I know it can be a stressful time waiting for the test results.

Thanks for your replies. Her MS tests were positive. I'm still in shock. My mom is wondering what the heck is going on with her children!!! There are 4 of us, I have fibro, IC, and various other problems, my older brother is in the process of tests for liver disease, my sister was diagnosed with MS, so that leaves our youngest brother. Hopefully nothing happens to him. I'm so upset! It also makes me thankful for fibro. It could be so much worse.

I am so sorry for all that your family is going through. I can tell you in the beginning of my process they thought I had MS. My tests all came back normal. They decided I am FM but I still wonder sometimes because I agree that the symptoms are very similar. I hope all works out for you. Good luck.

My rheumy tested me for a bunch of things with similar symptoms, including MS and lupus. I'm sorry that your sister has MS, and I hope she is able to continue with her life as "normally" as she can.
Lou

Wow jennagale, I hope your sister gets good treatment from an MS specialist. I also hope you have heard by now that most people diagnosed with MS don't find themselves in a wheelchair down the road any more. But still, the troubles can be very hard to deal with. She will be needing extra hugs right now!

Dear Jen,

OMG you need to breathe. A new diagnosis no matter what the label is so hard to chew on and digest. It is frightening, for the unknown in the future.

BUT I want you to know that SO MUCH HAS HAPPENED in the world of MS. Major research and meds that are holding it at bay have come to the public.

I also was thought of as MS as said above our symptoms overlap....big for MS is loss of function or hyperreflexia (when they hit you with the hammer and you jump....THEY jump to knock you over!

On CT there is demyelinations (loss of the fat that protects the nerves) that we don't have. Acording to where you demyelinate is where the symptoms are. At times the hallmark is vision.......(which i thought I had) But you then make more myelin and the symptoms go away...it is a loss and rebuild issue.

The meds stop this process so that there is no permenant damage.

I don't know where you live but in NYC there is a world renownd specialist. MY neice has been fighting this for over 20 years. She was a child when diagnosed......RARE. He has gotten her through a pregancy now, she works as a teacher and has a full life. SO it can be done.

Look into tysabri the newest med out there...but there are mainstream therapies that all take,.

Breathe, this is a treatable, workable and stabilizing disease. It can happen. You cannot catch this. It is her immune system eating her myelin and they need to stop that in it's tracks so no damage is done. My only hope is to go to a large teaching facility or research your physician to be sure it is the best you can do for your area.

All my best. Also neurology has a great newletter for MS....so much out there to get educated. Hugs to your family, there shouldn't be such worry for anyone during the holidays...

Nancy B

Thank you all for your replies. My sister has had 5 days of 'infusions', of some kind of steroid. She said she feels amazing. She had been sleeping from 5 pm until the next morning every day. Now she has her energy back. I haven't asked her who her Dr. is, but I'll be sure to mention that she needs to look for the best. I have to go over 2 1/2 hours to see my fibro doc, but it's worth it because I get top-notch care, that I wasn't getting where I live. Nancy B.- we live in OH, so we have Cleveland Clinic and Ohio State, luckily. She's been going to her local hospital for now, and I'm not sure what the future plans for her treatment are.
When I see my fibro doc I'll make sure to mention it to him as well. He's located near my sister, and he may know of some good MS docs. (neurologists?)
Thanks so much for all of your responses and info. For now, we're all keeping a positive attitude, but the fear does creep in.

That's awesome - I'm glad your sister feels amazing!
Lou

I'm glad your sister responded well to the steroid IV. Keep that positive attitude going!