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That does sound pretty dreadful jactac. But I’m confused. How could the neuro say you’ve had a relapse and become progressive? Isn’t it more likely one or the other? Unless that’s what they’re testing out with the steroids. But then steroids 6 months after a relapse aren’t likely to produce much of an effect.
I suspect that because even we can’t be certain whether something is a relapse or not means that the neuros are often at sea too.
What a flipping crappy experience.
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Oh jactac, your post is so accurate, there’s even a funny side. So many of us have been there.
Between 2004 - 2011 the doctors made me think I was a hypochondriac! I saw every Ologist there is. Gynae, Urology, Rheumatology, bowel tests galore (what a laugh that was). A day ward for tests on blood flow & circulation. Had an operation to hoist my bladder up with tape (leaking urine) because at “my age”, bladder weakness is common. Another operation to remove some cells from my mouth to see if I had Sjrogens disease, 15 stitches inside my lips & some threads hanging out. I looked like Frankenstein. Then saw a Neuro psychiatrist to check if I had early dementia. Tests asking me if I knew my name, what was he holding (it was a pen thank goodness) and to copy & draw a shape. He got a shock when I told him it’s not just a non descript shape, it’s a hexagon!
Eventually I saw a Stroke specialist who ran every test there is. This led to a Neurologist & diagnosis of MS without relapses. One year later, PPMS was diagnosed due to no remissions or single relapses. Just constant symptoms and no treatment to slow it down.
SEVEN YEARS going from pillar to post before the correct diagnosis was given. From what I’ve read, Jactac, we’re not the only ones. Perhaps there are more clowns in the UK than the 125,000 people with MS.
Hope your remission arrives soon.
Crumbs Chrissy that’s awful. Do you know I’ve noticed a change in attitude from some of the doctors in my gp practice, I will say most of them are excellent, but there was one dr who and I quote said to me a few years ago before ms raised its head, “ I don’t think you have migraines, I think you’ve got issues”! So, now with the benefit of mri scans and knowing I have at least 8 lesions I can say yes I’ve got issues but not the type she was thinking of! Thankfully she has left the practice. Incidentally, she also asked if I was sure if my mum had breast cancer, which I should think after my mum has had radio therapy the first time and a full mastectomy the second time that I was sure. I left that consultation in shock, which turned to anger. I went back saw another doctor and was referred to the genelogist and now get annual mammograms. Some time later the senior practice doctor actually apologised to me. I just don’t understand why they think we are making things up?
All we can do is be polite firm and stick to our guns. The systems overloaded. But we will get there eventually. Good luck all. P.s jactac I’m a South Wales bod as well,well it’s where I live now but east of you. My Mum’s from Neath area originally thou. I’m not under Morriston. My mum was impressed with Morriston thou when she had plastic surgery following her breast cancer. I think like all things in life there is good and bad everywhere. Although, obviously no one wants the bad one thou!
i feel for you-i do.
but ms is not on their priority list. it is of course on ours.
we expect a professional to be just that but reality is they are just as varied as we are.
its all down to luck that you meet the right professional for you. thats not right of course but i believe it to be true.
hope you find the right person for you-i really do.