I've been tentatively dx'd with MS (they just wanna rule out strokes, which they doubt because of my symptoms, + I'm 38 so not super common).
My issue is that I've been ill for over a year now. My appt. won't be for another 4 months. I'm not in a remission and haven't been since Nov.'11, & I fear the amount of de-myelination that's occurring whilst I wait. I'm very often bed-ridden, and if it's a crappy symptom, I'm experiencing it.
I phoned the office to express my concerns about the potential permanent damage I'm experiencing, & they can't help.
My MRI was November, btw, & I've been to the ER 2ce now for steroids. The ER Drs are very helpful, & both assessed me & feel its MS. They even contacted the Neurologist & expressed their concerns about continuing attacks and damage.
Any suggestions? Is this a normal wait time? (The only other Neuro, an hour away, has a Year wait-time!)...
It is very frustrating. I feel for you. It will be 16 months by the time I see my MS Specialist again and I am an established diagnosed patient. It was 8 months for my first appointment. There is a shortage of MS Specialists in the country. In some places it is worse than others. My doctor literally has thousands of patients and there is only one of him. We have five MS Specialist in our area with the MS Society knowing of over 5,000 people diagnosed with MS, and more than 5,000 undiagnosed. Here a year is typical for a new appointment with a MS Specialist.
You can ask if they will put you on the waiting list for a cancellation. If you are an established patient you might ask to see a P.A. if they have one.
Neurologists do not look at MS as an urgent thing most of the time. Strokes at the time of the stroke are urgent. My diagnosis took two years of going every six months and having tests, They like to follow you over time. It is rare to be diagnosed on the first visit. I had an abnormal MRI the first time but it took four abnormal MRIs every six months over two years to be diagnosed with MS even though the Doctor thought it was MS right away. If you were just tested a Neurologist will want to see you in a few months.
I know it is frustrating. Sometimes going to the ER several times will get the ball rolling but not usually since most ER Doctors know little about MS. Most times they will just say you need to follow up with a Neurologist. It is very frustrating. Young Doctors do not want to be MS Specialist and the older ones are retiring more and more leaving a shortage. It is very frustrating.
Hi and welcome to this little corner of the web. I see you are from Canada and honestly I don't understand exactly how your medical system works but the wait time for the neuro appointment isn't out of line. There are many folks here, like Alex wrote, who wait for months and months to get into the doc. Be sure to make that call and ask about the cancellation list - but remember that unlike so many other diseases, MS usually moves slowly.Patience is normally required in the disagnosis part of this disease.
Thanks both, so much.
I am on a cancellation list, & luckily the 2nd ER Dr.is still working on getting me in sooner. If I were still mobile I would probably be more patient, but I'm trying.
Stay well, and thanks again! A. :-)
I've been fortuitously bumped up on the wait list-maybe as soon as March/early April!! Way better than the end of May!
This might be the Only time I say that I'm a wee Glad for the near-constant vertigo, double-vision, leg weakness & Lhermitte's!! Ok, THAT sounds nuts, even to me. But precisely those symptoms got me bumped, so it means I'm just THAT MUCH closer to treatment!! Hooray!
Peace and love, All! A.
I never, ever dreamt i'd feel fortunate throughout this entire ordeal, but now I do. I can receive my health care and medications at very very low rates through the university health system here, and I was sent to an MS specialist immediately - right after the first MRI.I sincerely hope that everyone here can receive the health care that they need promptly.
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