Questions for those who have both Fibromyalgia and MS

[Anaya-Amani]

What was your intial dx? What made you seek additional dx? Were there any particular symptoms that made you realize it wasn't just FMS or MS? I have FMS and my symptoms have changed over the last 3 years and I've sought additional treatment and test but the Drs. keep saying it's just FMS. Now a year later and the symptoms that made me know something more was going on have come back and I'm not sure what to do.
I really sympathize with all of you guys that are still in limbo because, like in my case, it feels like the drs don't care to hear anything more once the test come back clear and they write it off as FMS. I feel weird because I don't want something more to be wrong with me but obviously something more is going on and I need to know exactly what.

[apple19]

Hi Anaya,
Sorry you are going through so much right now.
I was diagnosed with fibromyalgia in 1996. Now that I think back I was having some symptoms that could have been MS. I went to rheumatologists and neurologists and they wrote everything off as fibro.

In 2008 the symptom that sent me to the ER was right side spasms that came every 20-30 mins. That was a monday and by wednesday I was dragging my right leg. I went to my GP who suggested an MRI and a neuro but was almost sure it was MS. That was the first time anyone had mentioned that to me.

The neuro was very quick to call it fibro but i insisted that the right side spasms, weakness and pain were different
feelings from the fibro. Within the one year that I saw him he ordered three MRI's. The first two were clear and finally the last showed demyelation. This all took a year from the time of the first major relapse to the diagnosis. He finally said that I had been battling this since 2006 and that my case was tricky. He suggested that I see an MS specialist at one of the MS Centers. That was the best move I made.

I feel your pain and know exactly what you're going through. If you have to change docs, do so. Keep seeking help until you get your answers. I hope you find relief soon.

Take good care!

[ChristieAnn67]

What was your intial dx? What made you seek additional dx? Were there any particular symptoms that made you realize it wasn't just FMS or MS? I have FMS and my symptoms have changed over the last 3 years and I've sought additional treatment and test but the Drs. keep saying it's just FMS. Now a year later and the symptoms that made me know something more was going on have come back and I'm not sure what to do.
I really sympathize with all of you guys that are still in limbo because, like in my case, it feels like the drs don't care to hear anything more once the test come back clear and they write it off as FMS. I feel weird because I don't want something more to be wrong with me but obviously something more is going on and I need to know exactly what.

I have been diagnosed with fibro by a rheumatologist, but would like a second opinion on it. She ran a few tests, and touched me a few places and said "you have fibromyalgia". I wasn't too happy. Anyways all my aches, pains, tingling, weird sensations, weakness, and the burning in my legs especially are really becoming life altering. I can hardly walk across the room or do a single chore without my legs giving me fits. I am currently in limbo land with MS. My brain shows several white matter lesions, "2 out of 3 McDonalds criteria". I see my neuro tomorrow for my regular follow up, but now have to talk about my latest symptoms of Bells Palsy. oh joy!!!

I think you should get a second opinion and see what they say...and take your list of questions with you. I know how easy it is to get in there and all those questions are gone from your mind until your walking to your car to leave. lol. Good luck. Hope you find some answers.

[tortis]

M.S. First

Hi, I sent you the longest post of me life yesterday but it did not get there? M.S. was my first dx in 1998 after about 25 years of being told that it was all in my head and that there was no pain in M.S. I was always complaining of many different muscle and joint pains so they finally sent me to a rheumatologist who said fibro and then some, that was 2009. Do not stop looking, you know your body. Very hard to get M.S. dx without spinal tap confirmation and m.r.i. lesions.

Good luck, PEACE
Tortis

[Spydre]

My diagnoses literally came within a week of each other. But there were different circumstances leading up to both. The fibromyalgia, I had back issues for months, a doctor that wouldn't do anything, and finally I changed doctors, and met all the criteria, and she diagnosed me. Lyrica worked, unfortunately, I proved allergic to it.

My MS, I had a seizure - first seizure in nearly 10 years. My neurologist did an MRI to make sure nothing was wrong, since I was medically controlled all that time, and found the lesions - there were still few lesions. I had a few symptoms, but nothing glaring at that time. Six months later (almost exactly, I had just started driving again), I had weakness, tingling, and numbness, that pointed to a full blown MS flare. An MRI confirmed enhanced lesions, so the standard spinal tap was done just to confirm (he was sure it was MS, but he wanted the spinal tap to make sure).

Now, sometimes, I can't tell if my symptoms are from one or both, or even something else entirely. And my primary care doc can't always tell, either (she treats my fibro, because when my rheumatologist left town, I got tired of having so many freaking doctors - one neuro for my epilepsy, one for MS, primary care doc, psychiatrist, etc.).