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Multiple Sclerosis Community
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Avatar universal

Still not 100% convinced!

Hi there, i'm new to this forum and have a diagnosis of fibromyalgia after many years of being in limbo land with all sorts of symptoms.. before my fibro diagnosis they suspected MS and i was given an MRI on the brain that came back clear so i was obviously told that i don't have MS, however,i have some symptoms that make me wonder if there's more going on, i had a really bad bout of blurred and double vision where the leaves on the trees were all furry at the edges and one big green mesh and no matter how much i rubbed my eyes, they wouldn't clear, i lost my sight for a very short time whilst trying o read a magazine, it just went black and then came back again.  Vertigo, nerve pains in shoulders, arm, legs, hands and feet, i also have a squeezing around my torso that wakes me up and takes my breath away, it hurts and feels like my ribs are going to crack under the vice-like pressure and lots of stiff painful, fatigued muscles, when i had a really bad flare up a few years ago that made my right arm fall to my side and i felt like i was having what i could only imagine to be a stroke, very scary as well as pins and needles, and the list goes on... Is it normal in fibro to have a lot of nerve pain that brings you to your knees and what about the squeezing sensation that caused me to think i was having a heart attack...oh and i also have lots of floaters in my eyes at the moment...i was never given a scan on my spine, no spinal tap, no contrast...nothing even though at the time i was very shaky and had a tremor in my right hand and was very un-cordinated and had fallen a number of times, my muscle spasms were so bad i ended up in hosptal dosed up on meds and coukld hardly walk...any thoughts anyone??
7 Responses
279234 tn?1363105249
Hi and Welcome to the forum!

I'm not sure if I would be 100% convinced either. I'm sorry your having a lot of issues. Did your doctor check you for the MS mimics through blood panels?

I have several family members who have fibro. It is a very painful condition to have and is very hard to control. As far as I know, eye involvement, is not apart of Fibro. For your eye issue, I suggest you seek out a opthamologist. They specialize in the diseases of the eye. They could run a full exam on your eye and check out your optical nerve. Sometimes if they suspect something, they might order MRIs as well. They can help in your diagnosis process.

I would also seek out another neuro. I'm not sure if they checked everything they should have, but if you are questioning your diagnosis, then it wouldn't hurt to get a second opinion on the matter.

One of your symptoms that you describe ("squeezing sensation around your ribs") sounds similar to the MS hug. It's usually caused from a spinal lesion, but spinal lesions are very hard to image on a regular MRI machine. I would report this to your neuro or doctor and do get a c-spine and t-spine MRI on the highest available machine you can get on. Here is a link to a page about the MS hug. I'm no doctor, but it does sound similar..and you should have it check out regardless. It could be something else as well.

http://ms.about.com/od/signssymptoms/a/ms_hug_pain.htm


Check out our Health Pages while your here (yellow icon). It has a lot of info that will guide you through this whole process. I hope you fell better soon. Take care and hang in there.
Avatar universal
Thank you so much for commenting on my post.  I definately meet the criterior for Fibro and yes it is a very painful and debillitating condition but i just wonder if i might have both??? If all the tests that could be done where done to rule MS out then i would be ok with that as i would not like to have MS, who does??? Funnily enough the nuerologist who said that i don't have MS had the nerve to imply that i would have prefered to have a positive diagnosis, how rude and insensitive. What some of these mediscs don't understand is that for the most of us we have been in limbo-land for many years with no real treatment or help for our very real symptoms and having a diagnosis can be a real relief even if it in itself is not a nice one.  I will continue to research and pursue other avenues in order to make sure that nothing's been missed.  In the mean time i am fighting for mobility and disability benefits, oh here we go ..more obstacles lol
1312898 tn?1314568133
Do you know if the doctor used MS Protocol when he ordered your MRI?   Was there contrast involved and all the other requirements?  I have learned that it is really important in the diagnosis.  Fibro is a debilitating illness on it's own, unfortunately not very well respected or understood in the medical world.  I have heard that people with Fibro sometimes are diagnosed with MS later.  

THere are alot of other tests that can be run besides the MRI's.  I would get another opinion and not allow the doc to stop at the MRI.  Doctors can be downright lazy

lois
911669 tn?1294099188
Hi and welcome!

I too also suggest you get a second opinion from a neurologist.  Start keeping a documented time-line of your symptoms and history.

Too, if you could when you are posting, break up your paragraphs into smaller ones because MSers have a difficult time reading large paragraphs due to optic neuritis etc.
and we cannot respond due to this.

I agree that you definitely need further testing etc.  It can be a long road for DX.  I am still in limboland for 7 years at this time.

The best of luck!

terri
1253197 tn?1331209110
Hi there (I wonder who slickchick1 is????) Welcome to our great forum. I am also so sosrry to hear of all the symptoms that you have I have a freind who has fibromyalgia and it si a very debilitating condition. I would just go along with what everyone else has said and suggest that you try and see aonther neurologist for a 2nd opinion.

Keep us posted and be patient..

With best wishes

Sarah
Avatar universal
I have fibro too, along with a host of other muscular and spinal problems. I get the squeezing  chest pain you have described, along with the pins & needles, fibro "fog" thinking, etc. Fibro mimics a lot of ms symptoms. Unfortunatly there are no difinitive blood tests, x-rays, or mri's to aid in the dx. The one thing fibro doesn't cause , at least to my knowledge, is eye problems. You need to see a good opthomologist.

You might see a rheumatologist for a 2nd opinion. A good rheumatologist can help you manage the sx's of fibro. And yes, of course you can have more than one disease, including two or more auto-immune ones at the same time. Ain't life fun? LOL

Best wishes
Maggie
Avatar universal
My neurologist says that that the MRI is the best diagnostic tool for MS but that a clear MRI does not rule it out. He told me about a study that was presented at a conference he went to where a diagnosed MS patient was given an MRI every week for a year. No two of them were alike. Some had lost of lesions, others almost none. And the weirdest part was that the scans that were done when the patient reported the most symptoms were the clearer ones.
I'm showing the same symptoms that you're talking about. I was dx with FM about 15 years ago and have been frustrated with doctors and medicines ever since. There's just so much unknown about it all. My neurologist wants to do another MRI (the first one was ordered by an ENT for vertigo and tinnitus and was done without a flair sequence) so I'm repeating it later this year.
Good luck with getting a more definitive diagnosis. I appreciated the fact that my dr understood that although I certainly do not want to have MS, that the FM diagnosis is so nebulous that sometimes it seems life might be easier to manage if we did actually have something that had a protocol of treatment. He also said that I should understand that FM COULD cause all the symptoms I was having.
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