I am truly fed up. Been in lmbo for years and been seriously investigated for the last 5 !
I recently found out that Hashimotos hypothyroidism (which I have) can lead to Hashimoto encephalopathy myelopathy (CNS lesions. I asked if I could have the test for this which is a blood test (expensive probably). But was told I was “clutching at straws as this is very rare.” My reply was “well whatever I have is rare as you cant seem to be able to diagnose me”
There is a service at the John Hopkins Hospital in America were you can send all your medical reports and MRI scans to them for a fee of $500. They are experts at “rare neuro conditions” and some like Hashimoto encephalopathy myelopathy are treatable. Also if they find I do have MS then finally I will be allowed some of these DMD treatments that are available. Basically sitting on the fence is no good.
Moyna, l can understand your frustration at the incompetence of the diagnostic treatment you have had - and failed to get so far.
$500 dollars - is what £350. l would go for it - for peace of mind. lf the US hospital state you have MS - will the UK neuros agree. They have a mind of their own. From what l have learnt from people on the Biotin for Progressive MS face book group. Neuros wordwide do not have a good rapport with their patients.
Fingers crossed that the results will find you have something that is treatable. Not that we want to lose you from this page.
Thanks Spacejacket I think I will but I imagine it might take some time to get copies of my MRIs. I am still faithfully taking the biotin. I feel energized on it althought dont know for sure whether it is the biotin or the other stuff I am on !!!
I have my FES now and it is good but when I go back I am going to ask about the 2 channel stimulator as I dont bring my knee up enough when walking. When I take it off my foot feels much heavier so I know it is doing some good.
I assume you’ve had all the other tests that are standard for an MS diagnosis? Ie lumbar puncture and visual evoked potential as well as MRIs? Usually, MS is not diagnosed from MRIs alone.
Assuming you have copies of everything, and you’ve tried to get another neurologist nearer to home to try a bit harder to properly diagnose you, then I’d agree with spacejacket. If you can afford it, peace of mind as well as more effective treatment is worth $500.
Hiya Moy, I know that you like me, have been left in half limbo for a long time and in no doubt that ain`t gonna change with the NHS.
I`m not sure if I would try to go the US way…but it is totally up to you of course.
All that digging, checking, trying to get the US guys to talk to the US guys if necessary, would be too much stress for me.
But if the current stress of not knowing…and of course the possibility of finding an effective treatment, is right for you, then yeh, go for it darlin!
I wish you all the luck in the world.
I have decided against going for genetic testing to see if I do have HSP. This is because they only test for the 6 (or so) more common mutant genes. There are around 60 possible genes which cause HSP, so if I got a questionable negative result, what`s the point? Plus there is no hope of a cure for it anyway!
Anyway, back to you, I do hope you find your answer.