Hi everybody,

[valerielarsen]

I have many questions to ask you, I'm new to this, so I'll try to be brief.  I'm still a little shocked.  I was diagnosed 2 years ago with fibromyalgia, and I don't really think that was an entirely accurate diagnosis, as it started out with fatigue so extreme I could hardly get out of bed, and it's a long story after that.  I live in AK but came to AZ for some hormone balancing/general doctor care/regrouping and fibro-care. I went to a doc the other day only to get a referral to do some aqua therapy for my elbows (don't laugh lol).  I prefer natural/holistic remedies because of med side effects. Anyway, I told him about some unusual things the "fibro" was doing, and the pain had diminished quite a bit here in AZ.  But, what was now going on was electric/warm "zaps" in my left ankle, dizzy after a bath, a constant ringing in my ears, especially after baths (which were recommended to me for the "fibro relief"), and tremors.  I also get dizzy after a bowel movement, not to the point of passing out, but kind of blacking out. My left hand/fingers go numb, but sometimes it diminishes, my forearm especially on the left goes numb, and my fingers are always freezing-I'm extremely cold-intolerant.  My left side of my face/temple head has been going numb, but not painful-just kind of warm and electric-like.  It comes and goes.  I also told him about my vision going blurry and my letters/numbers transposing as I was reading, and brain fog.  I have spent the last 2 years researching/studying/joining support groups for fibromyalgia, because that had been my focus, and looking for a remedy. I knew nothing about MS, because all I've researched is fibro!  He said he strongly suspected MS, but told me it may be early for it to show on MRI.  I'm still a little baffled with this, and no nothing about it.  I also have no insurance, so can't really afford an MRI right now.  Does anybody have any suggestions/advice for me?  I have had migraines in the past, so I don't know if those could show up on MRI or not.  I am confused and frustrated.  Could you please give me some direction here?  Thank you all!

[maxthecat43]

It does seem like you need to see a true neurologist.  No one will force you to take any medications- but for diagnosis, you need a neurologist.  If it does turn out to be MS (Be prepared to wait for a while to get a real diagnosis.--MS is notoriously difficult to diagnose...) the best MS centers include natural medicine and diet too.

[karryon55]

Hi there & welcome to the community.

I would have to agree that you should try & see a Neurologist. Unfortunately you will not know what is causing your symptoms until you see one. I am not convinced on the statement of "it's too early for anything to show on MRI" because I don't believe that to be true at all.

Unfortunately there is a lot of testing to dx MS & exclude the many mimics. It is not always easy to dx & can take years in some people. Migraines can show some irregularities on an MRI sometimes but a good neuro can see the differences between these & MS. It is important that you have a thorough Neurological examination (hammering knees etc) & this should give the neurologist some accurate information of what is neurologically going on. This is probably the most important thing that could be done at this stage for you.

I understand that it must be tricky with no insurance so my advice would be to at least see a neurologist who specialises in MS before having an MRI. MRI's are very expensive as well.

The dizziness after going to the toilet could be cardiovascular & there is a simple test your PCP can do in their office to check this. It's is called the Valsalva Manouver. Try not to have hot baths or showers in the time being if it makes you worse & keep it to a warm shower. Also check with your PCP about your fingers because this could be Raynaud's phenomena. Try & put your hands in your pockets, wear gloves, if out walking put some hard partly cooked potatoes in your pockets to keep them warm.

I hope some of this has helped you a little. I'm sure some of the more experienced members will chime in soon with more advice for you.

Karry.

[kwarendorf]

Hi VL - Welcome to our little MS Klatch.

I don't know much about fibromyalgia, but the symptoms you describe seem wider than those I've seen associated with it. I agree that it is time to see a neurologist, more specifically an MS specialist.

I also agree that your PCP's statement that it is too early for anything to show up on an MRI to be inaccurate. If your symptoms are due to MS, rather than fibro, you have been experiencing them for more than two years. This is plenty of time for them to show up on an MRI.

I understand that you currently have no insurance. Diagnosing MS can be a long process involving many tests. In my opinion this makes finding an MS specialist even more important. You need to focus your available resources as sharply as possible.

Keep us posted,
Kyle