Currently being looked at for MS, but friend suggested fibro

[Geekerbell]

Hi everyone,

Well, for the past few months I've been on a roller coaster ride of crazy symptoms and have seen over half dozen doctors. Two of those (general practitioner/ family doctors) say clinically I present as having MS. I had a brain MRI that showed two small lesions, but that one neurologist said were "insignificant", but did not do a full exam or any other tests and dismissed me. I am currently awaiting an April appointment with a new neurologist who is an MS specialist.

In the meantime, a friend of mine (who has fibro) and I were talking about things and some of my symptoms and she asked if any of my doctors had suggested it could be fibro. I had never even considered that, and no, none of my doctors has mentioned it. I do have many symptoms that could be attributed to fibro, but I also have a few that I'm just not sure would be.

Anyone here who was tested for MS or other things before finally getting a diagnosed of fibro?

And some things that I am experiencing that I was unsure if it would be fibro: balance and proprioception problems, vision problems due to optic neuritis (as diagnosed by an ophthomologist), recently diagnosed with trigeminal neuralgia, major muscle spasms usually on my hip flexor causing major main and sometimes trouble walking.

I think the rest of the symptoms could be contributed to fibro, at least from what I have read and learned from my friend.

Thoughts on this? Should I also ask for a referral to a rheumatologist, or just wait to see the next neuro dr and go from there?

Thanks so much for any information.

 

[Yatte]

Re: Currently being looked at for MS, but friend suggeste fibro

Geekerbell. I believe your best option here would be to wait and see the neurologist first. This symptoms could all be related to the lesions in your brain, and the locations there of or it could not be the case at all. The main reason I say this is, most of these symptoms tend to match with MS. the other reason to see the neurologist first, is the possible medication that he might prescribe. You can then ask him for a referral to a rheumathologist, or somebody specializing in fibro, with a list of all the medication you are on. Some medicines tends to clash with one another. And I personally feel that if I need to choose between medication, the medication for the MS would be my preference. Although fibro is bad and incapacitating, MS is life threatening.

 

[Cynder]

Re: Currently being looked at for MS, but friend suggeste fibro

I had a brain MRI a couple of years ago, ordered by a neurologist, to check for MS lesions, and they didn't see anything at all. I was diagnosed with Fibro just last month.

 

[Geekerbell]

Re: Currently being looked at for MS, but friend suggeste fibro

Yatte - Thanks so much for your response. The more I think about it, I do think I am just going to wait and see the new neuro before making any other decisions. If I don't get answers there, or it doesn't cover all my symptoms and worries, then I will ask for a referral to a different specialist.

Cynder - If you don't mind me asking, what were your symptoms that led them to do the MRI looking for MS? Any balance problems and/or neuropathy? After the MRI that showed no lesions, did you stay with the neurologist looking for answers? Or did you go to other doctors/ specialists to finally get your diagnosis of fibro? Thank you!

 

[1sweed]

Re: Currently being looked at for MS, but friend suggeste fibro

I would agree with the above replies. It sounds like your getting good solid diagnosis possiblities from the neurologists, so stick it out and see what they say.

I was tested for MS as well, with MRI's of my brain and spinal fluid taps. But in the end there was not enough evidence to proof MS. So I saw rheumatologists until I received my diagnosis of fibromyalgia.

I know the feelings that you have about just wanting a diagnosis, but you have to be patient and wait so you get the right one. Good luck!
Please continue to share and let us know how you are doing.

 

[Geekerbell]

Re: Currently being looked at for MS, but friend suggeste fibro

Thank you 1sweed. It's always good to know someone else has "been there". In addition to how much it bothers me on a personal level not knowing, I also hate having to tell other people that I don't know yet what is going on.

I've always been very involved with our local theatre and with my kids' school, on top of running a home daycare. So when I had to back out of a few commitments in December and January, and now when I have to say "no" when asked to do things for those activities, I really feel bad not having a reason. My husband tells me I don't need to give a reason, because I don't feel well. But I do have a few friends at the theatre who know my problems I'm having, and it's hard when they ask how things are going and if I've been to a dr who has figured this out. I have nothing to tell them. :/

 

[1sweed]

Re: Currently being looked at for MS, but friend suggeste fibro

I had different symptoms that pointed to MS, but the doctors testing did not find what they were looking for. Things like balance problems and vision blurriness, one foot dragged when I walked. Muscle weakness that comes and goes. Severe headaches.

i can't remember it all first hand its been over 20 years ago. But it was rough going and I was so wanting them to figure it out so I could get back to normal living. If I worried about my condition I was considered depressed. So I stopped worrying and I was in said to be avoiding something. I felt turned inside and upside down by the time it was all over.

The way your doctors and family treat you goes a long way toward your own self image and whether or not you develop depression. Try to stay upbeat and optimistic, about your future diagnosis and illness. I know telling you not to worry is kind of crazy, but I mean the way you worry makes a big difference in your coping abilities. I hope this makes sense to you.

 

[omariferrari]

Re: Currently being looked at for MS, but friend suggeste fibro

This is tough. I sure hope you feel better. I wish I had the power to rid everyone of this horrible disease. It's sad to hear everyone suffering so much.