I'm new here

New diagnosis and before diagnosis
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I’ve not been diagnosed yet but having tests for MS. I had tests about 10 years ago after suffering from numbness and tingling, and the worst dizziness ever. I was working as a childminder then but at times I felt really drunk. I was sent to a neurologist who requested a mri scan and nerve conduction tests. Months later I went back to the neurologist who said the scan was clear and he was discharging me as there was nothing wrong with me. I suffered for months after and refused to go to another doctor for my symptoms fearing that I would be labelled a hypochondriac. Eventually the symptoms all but disappeared apart from a little clumbsiness.

Fast forward ten years. I was at an adults football match this June which I reluctantly went to as I dislike football. I was sat on the grass when the football was kicked with full force into my left temple. I experienced some dizziness and nausea for the rest of the day. Two weeks later I started with the most horrendous headaches at work. I now work as a senior carer in a rest home. I went to my gp who sent me for a mri scan and prescribed gabapentin. A week after the scan I phoned for the results and was told it was normal. A month later the vision in my right eye went blurry and I started with pain. After two visits to the eye unit who said my sight was fine I went back to my go. He brought up the report of the mri and it said 'areas of concern-white dots on brain) He then referred me to a neurologist. I chose a different hospital this time and the neurologist was great. I was unable to walk with one foot in front of the other. I didnt realise my balance is so bad. I also have other symptoms. Numbness and tingling, stiffness in legs, forgetfulness, dropping things, twitching, and the worst tiredness ever. I have had evoked potentials testing and waiting for another mri scan. I go back to see the neurologist in December.

Thanks for reading, I have tons of questions and still praying it isn’t ms but if it isn’t I will still be in limbo. It is five weeks since the blurred vision and I have only just noticed a small improvement.

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Hi Steph, welcome! I’m still pretty much at the beginning of my diagnostic journey, due to see a neurologist for the first time in November. Wow, you’ve had a long wait so far! I hope that you get some clear answers soon. In the meantime, make good use of this forum - there are some really lovely, experienced and knowledgeable folk here. I’ve found the MSS helpline really useful, too. Wishing you comfort and clarity :heart:

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Hi Steph… Its fairly common for MRI results not to give a clear definition for 100% diagnosis of ms. There are other tests i.e. Lumber puncture, blood blood and vitamin checks. I’m also nearly 10 years in and still not been officially diagnosed. In 04 i was wheel chair bound due to transverse myelitis. I relapsed in 08 whhich caused me bladder, bowel and balance issues. In Jan of this year my vision was affected, but tests ruled out devic’s disease so that was good news. I’m returning to neurology 11 Nov for my diagnosis. Limbo is a horrible place to be but this site opens your eyes to the vast array of symptoms people suffer, it provides both similarities and differences to yourself and your own battle with this illness. I wish you all the best in your journey. Carol x

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I hear what you are saying. I have had so many symptoms but once I was diagnosed with fibromyalgia stopped looking for links to be made. However, I have done my own research and I believe there are links to my on going symptoms and ms. I have never been told what is on my scans just that they are clear. Now reading your story I wonder if reading scans is very much down to interpretation. I wonder if it is possible to get full reports of scan results. I think after my next scan I am going to ask for a better breakdown of the results. Will let you know post November. I will keep you in mind…hope your results are more conclusive in December.

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Thanks for replying. I’ve been ill the past few days with a stomach bug which has wiped me out. I have mouth ulcers too which are really painful. I’ve never had them before.