Hi I’ve only posted a couple of times and always feel like I’ve been complaining so apologies in advance! I’m not sure where to turn now… Last year after a lifetime of hardly getting a cold, I was admitted to hospital where I stayed for 2 weeks with suspected myasthenia gravis, when my test results came back with no antibodies I was discharged, suspected after effects of a virus! The symptoms persisted, progressed and new ones joined them I went to Gp who referred me rheumatology he basically said nope u want neurology. Referred back to neuros…got sent to wrong clinic but neuro took a quick look and ordered MRI (brain)…finally results back letter says… Mrs Hughes you will be glad to know that you’re scan results were completely normal, this therefore rules out any neurological cause, including MS, for your symptoms. Hope you find this reassuring. I don’t want to complain and obviously I’m pleased but on the other hand does this mean I’m going mad??? Tingling, numbness, fatigue, shock type sensations in my face, ghost type double vision, bladder urgency, inability to walk or do anything for very long without being exhausted, recent onset of migraine headaches etc Apologies for complaining but I’m starting to feel like…well maybe I’m just going mad as no one seems to know what’s going on… In the past year I’ve had all the blood tests, MRI spine and brain plus LP Will I ever find out what’s wrong with me???
Sorry forgot to say I hadn’t had a virus… Also can’t manage the heel toe walk, walking on heels and balancing when eyes are shut…all are the same a year later! Thanks for reading
Sorry to hear You are getting no where as to finding out what is a wrong with you. Keep going , don’t give up, eventually it will come to light especially as neurology is such a complex thing. You are not moaning and we don’t mind if you do, that’s why we are here to help each other. Good luck in your search. Janet x
One thing’s for sure: there is no way to fake a clinical exam and certainly no way to do it unintentionally so your symptoms have to be real.
I have never understood why neuros think that a clear result and “no neurological cause” can put our minds at rest when all we want is to find out why this is happening. I can only assume that it helps them to avoid the words “I don’t know what’s wrong”
But I really do take offence at the conclusion that a clear scan rules out a neurological cause. Sorry, but that is b*******.
If I were you, I would be tempted to ask for another opinion. Of course, it’s going to be tricky for a neuro to work out what’s going on when the tests have been negative so far, but perhaps there are other tests that might help, e.g. evoked potentials, urodynamics? Hopefully your GP will have some ideas about who to see; maybe a neuromuscular consultant since the neuro wasn’t helpful?
Hang in there!
just want to add that you can self refer to the bowel and bladder clinic so that one symptom addressed
also take a vit B complex and vit D
Thanks for your kind replies, have made an appointment with the Gp to discuss what happens next! I know it’s a complicated area but I wish they would keep going till they give you the “this is the reason why” talk!