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Symptoms no diagnosis

Hi everyone this is my first time on here but I feel like I’m going mad 6 years ago I caught optic neuritis leaving me completely blind in my left eye I had mri and lumber punch which showed no ms they thought it was lupus and several other things it worked out I got my eye sight back and no more problems until August this year I came home from work very poorly had severe lower back pain first was told I had kidney infection but it never cleared I had blood test done which came back clear so I then had ebv virus blood test which showed an active virus I was not sleeping at night still in pain with lower back which then every day spread to new parts of my body first my groin feeling like elastic bands being pulled then my hips feeling like child birth still remained in lower back like a double decker bus just sat on my lower back eveey morning I wake with dead numb arms and hands like I had been laying on them all night pins n needles in right foot going up my Calf muscle then I got painful ribs they someone has a knife turning around inside them it went from right rib to both sides my right side of my body is very weak compared to the left hurt to walk to long loose balance a few times and then it all dissapeara for week and comes back only fewthings that never dissapear is the lower back pain neck pain and ribs I now started having very painful heads ache I been to see neurologist who put torch in my eye slapped my knees with a small hammer to test reflexes and sent me on my way saying he not worried but did send me for mri which I’m awaiting the results in some respect I would feel relief to hear it’s ms so I don’t feel it’s all in my head or feel I’m going crazy and I’m more concerned if my mri of Brain and spine is clear as to what is wrong with me doctor did think fibromyalgia at first but my friend has that and our symptoms are nothing a like my ribs felt like they was on fire the other night along with a wrist pain whici came out of no where like someone was squeezing my wrist right then like a pulled muscle feeling in my bicep and elbow area then low n behold next day that had gone away so now I double guessing myself I fell over other morning was not with it and felt so heavy like a lead wait I’m 38 years old with 3 young daughters who are having to see me so poorly I just need answers but feel in limbo sorry for long message

Hello

Welcome to the forum.

If you had optic neuritis and a simultaneous brain MRI, I think it would have shown up as active MS.

Also 80-95% of people with MS have a lumbar puncture showing Oligoclonal Bands in the cerebrospinal fluid but not in the blood serum. I assume that you didn’t, else the neurologist would have done more tests then.

Add that to the neurologist having done a recent physical exam (and there are certain reflex actions that can indicate MS, or at least a condition that is affecting the central nervous system) and not thinking it’s MS.

I suspect that your brain and spine MRI could come back as negative for MS. Not that I’m any kind of an medical expert, just from what I’ve read and learned over the years. So don’t take my feelings as in anyway doubting your need for the MRI, or that I even think that you definitely won’t be diagnosed with MS.

But it’s as well to keep your mind open to it not being MS. Which will leave you right back in limbo, still searching for the diagnosis that’s causing these awful symptoms. I do understand that when you’ve had symptoms for years, a diagnosis of MS can feel like a positive thing.

I hope the next weeks while you are waiting for the neurologist to stop twiddling his thumbs and get on with your case go as quickly as possible. And regardless of the answer, it feels like a positive result.

Best of luck.

Sue

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