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farleyts
06-07-2006, 11:37 AM
Several weeks ago, I went to the doctor for severe left sided facial pain, which I thought was bad sinuses or trigeminal neuralgia. My doctor ordered and MRI which came back with multiple white matter lesions suspicious for MS. I've had numbness, tingling, double vision, muscle weakness, aches, twitches, stiffness, overwhelming fatigue, and problems with memory and attention span in addition to the facial pain.

Four years ago I had similar muscle symptoms, although milder and had a pretty thorough neuro work up. They ruled out all kinds of stuff, ALS, polymyopathy, myotonic dystrophy, myasthenia gravis, lupus and I don't know what else. At that time, nobody mentioned MS. I had multiple EMGs, all abnormal, a ton of labwork, MRIs of the lumbar and cervical spine, but did not have a MRI of the brain. At that time, the neuro said we could keep on testing, spend thousands of dollars, and never get any answers, or we could watch and wait. I chose to wait. I did get better for a time, but over the last year have gone downhill pretty much.

I've been referred to a neurologist, who I see in two weeks. The one I saw four years ago has left the area so this is a new guy. What can I expect at this evaluation? Are there more tests he will likely do?

I've been doing some reading on MS and the treatments available. My big question is how to you all afford the CRAB meds? We don't have prescription coverage and it seems like they average $1500.00 a month. Who can afford that?

My biggest concern at this point is the fatigue, which is making it impossible for me to keep up with work, household chores. Lately I work and sleep and that's about it.

Any advice, or hints you have for managing the fatigue would be appreciated.

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sunshine149
06-07-2006, 02:19 PM
Fatigue is so "tiring." I've had luck with acupuncture to relieve it. Also, drinking lots of water and limiting things that tend to make you rundown in the long run (caffeine, nicotine, alcohol and sugar).

OzBec
06-07-2006, 10:25 PM
Hi Farleyts, Sorry to hear you are having problems but its good that you are getting closer to a diagnosis as you can get on with your life and not all MS'ers have dibilitating symptoms.Here in Australia once you get an official diagnoses the CRAB meds are covered by our medical system and cost around $28 a month and if you are on a pension or health care card you get them for $4.70.I don't know how people can afford to pay full price for them. Fatigue is one of my main symptoms but am now retired so I am able to have a rest of an afternnon and my children have all left home and my grandchildren are in school now so I don't have to help out looking after them through the week but I still remember how I had to struggle through when I was working before I got my diagnosis, which took many years. Good luck. Cheers





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