I'm so confused
Posted , 8 users are following.
I had a brain scan 7 months ago which showed lesions and demylation, I had a lumber puncture in January this year which was clear but I had a high csf pressure which was drained. I had to wait 10 weeks to see the neurologist but prior to this I saw my own gp who had the report from the neurologist, this stated that I could possibly have idiopathic intracranial hypertension and should start on medication immediately? I saw the neurologist who said I don't have MS or idiopathic intracranial hypertension but ME. I have more of MS symptoms, the neurologist was very rude and didn't listen to me or ask about my symptoms. I've really had enough. My mum who attended with me has said she would pay for a second opinion as all my family can see how I've deteriorated over the last couple of years. I posted in the MS forum a while ago as my gp did say it's looking more like MS. Yesterday I felt so poorly and slept all day and night. This isn't normal. I'm trying to get back to work but finding it very hard, this fatigue and heavy legs is so life deliberating. I can cope with the other symptoms as they have become part of me. But I could chop my legs of, it's like climbing a mountain going upstairs and waking as become a task. Has anyone experienced problems with a diagnosis.
0 likes, 18 replies
phillis55984 Lulu71
Posted
My sister had problems with getting her MS diagnosed. The first doc thought it was systemic lupus. It wasn't. She finally got a diagnosis after a lumbar puncture that gave a clear diagnosis. Also, she, too, had brain scans that showed the typical MS lesions. There was no doubt that it was MS. I wouldn't wish that on anyone, but neither wold I want to be walking around not knowing what was the matter. And yes, she also had trouble walking. Heavy legs. Stairs were impossible. Walking became a chore. Get a good diagnosis. There is something available for MS patients now that was not available when my sis was alive, and from what I hear it is very effective. Good luck.
Lulu71 phillis55984
Posted
I'm hoping that when I see the next neurologist he'll be able to give me more answers, my own gp thinks it's looking more like MS but obviously can't diagnose it. I'm hoping it won't be long before I get a call for an appointment. Im going round in circles at the moment which is frustrating.
emma38909 Lulu71
Posted
Hi lulu
I had all the symptoms your expressing, my systems where identical to MS, although nothing showed up on MRI scans or other tests. I had fibromilga chronic fatigue each year I got worse healthwise. I'd collapse faint constantly daily had heaviness aches pains headaches numbness I couldn't digest food any longer either. I ended up flying out to see prof scholbach who has a clinic in Germany he diagnoses artery compression and knows alot about these conditions. I felt as if I was diying and Drs here in UK wernt helping. I flew out to see prof scholbach got diagnosed with 5 artery compressions each one giving me multiple health problems. 8 was diagnosed with nutcracker syndrome ncs, median accurate ligament syndrome mals, pelvic congestion syndrome pcs, May thurner syndrome mts and a compression under the left femoral vein in hip. Iv since had a new type of surgery abroad in Germany different to what offered in the UK and around the rest of the world even. I'm now 100% better I don't have food intolerance now I don't faint have pots or autonomic problems. I have zero vein pain I don't need a wheel chair or to sleep at all during the day no infections headaches 5heyve all gone I feel better now than I ever have x