The doctors won't diagnose his MS (or whatever it is). What can we do?
August 10, 2009 6:17 PM Subscribe
Would really like to hear from any Mefites who have been through this particular hell.
My partner has been suffering for many years from symptoms that we recently realised are a perfect match for MS. Many members of his family, including his father, have MS, and his problems right now are mirroring those his father had that led to his diagnosis. We did some research and he is a perfect, 100% fit to pretty much every online list of MS symptoms.
posted by anonymous to health & fitness (23 answers total) 1 user marked this as a favorite
He is in almost constant pain and 90% housebound, has been for many months.
After blood tests, a neurologist and a couple of MRIs, he's being told that he is in perfect health, has been prescribed basic vitamins, and told that if the problems persist to come back in four months to get a referral... to a psychiatrist.
Needlesss to say, we are both fuming right now. He is in pain. He is suffering. It is NOT in his head. We want to start him on a course of whatever it is he needs so that he doesn't have to be in pain and I don't have to see him in pain.
Details: he has experienced a variety of on-again, off-again ailments for many years. Most prominent are big bathroom problems (constipation/diahrrea on a near-daily basis, even with diet changes), and attacks of crippling pain (he describes it as fire or lightning) and/or numbness in his legs, to the point where stairs and getting up from a seated position are painful and sometimes impossible. Also extreme constant fatigue and short-term memory loss, to name a few.
These problems come and go but the attacks have been getting worse and closer together in recent months.
Doctors (GPs at local walk-in clinic) kept saying he was fine, until finally he got one to do a few more tests - at the point that the rubber hammer to the knee got no response at all twenty times in a row, blood tests were ordered.
- Blood tests came back "fine"; when he pointed out that he was in no way "fine", he got a recommendation to neurologist.
- Neurologist watched him walk, poked him, etc., prescribed a mildly radical change in diet, and sent him for an MRI (head/spine).
- We followed the diet religiously (I made all his food and as he can barely leave the house there's no cheating), miraculously managed to get the MRIs done within the month, and then had to wait another month for the follow-up with the neurologist.
Today the neurologist said that everything looked good and that he could have some vitamins if he wanted. No signs of anything in the MRIs. We asked about the diet, and were told that he could follow it or not, it didn't really make a difference (!). He said to try the vitamins for four months, and then to come back and if he was still having problems then he would refer him to a psychiatrist.
We are.... angry.
It's been such a struggle to even get a doctor to LISTEN, and finally we go the whole route and the end result is a patronizing dismissal. He could barely even get to the doctor's office today because his legs were so bad, with numbness below the knee and pain above it, and he gets a shrug and a pat on the head?!
From all my reading I know that MS often goes undiagnosed for a long time; even my father-in-law got three different diagnoses before he finally got treated for his. I've seen first-person accounts of this same frustration online. We are still both pretty sure that this is MS - with his symptoms that's one of the nicest diagnoses he could get - but WHATEVER it is we want to get him diagnosed and TREATED already! I just don't know where to go from here.
What can we do?
What kind of doctor should we try to see?
What should we be doing on our own while we try to get a medicine man who will actually help him?