Hi 4boysmom,

My symptoms go back to the late 70’s, but a much of my difficulties were blamed on sinus infections, stress, over-working, etc. Don’t know how those things could cause my legs to buckle, etc. . . . but I adapted my lifestyle to my limitations.

In 1991 I had a Transverse Myelitis attack that affected me for 18 months. They told me then that it was either a virus that got in my central nervous system, or MS. After a botched LP, I was categorized “probable MS”.

I refused a MRI at the time (and for many years after), than promptly went into denial since there was no way to treat MS anyway back in those days.

I had small "flares" over the years to 2003, than I had another TM attack. MS was confirmed, but it took a MRI and another year or two for me to eventually reach "acceptance". That was the only MRI I ever had, and it was deemed not necessary for the dx . . . my doc did it out of morbid curiosity. I had two LARGE spinal lesions, and only 3 brain one's (without contrast).

TM (spinal lesion) attacks can have the effect of leaving someone bedridden from the get-go 1/3 of the time, moderately disabled 1/3 of the time, and mildly disabled 1/3 of the time. I have had three of these attacks so far, and I am moderately disabled at an EDSS of 4.0 or 4.5. I was one point higher before starting on LDN, and have remained disability “stable” since starting that drug in 2005.

My worst symptom is fatigue, and that is mainly what took me out of the workforce 3 yrs ago. I have other symptoms, like pain, spasticity, bladder, bowel, cognitive difficulties, etc. . . . all of which makes it difficult to be reliable/consistent in a job.

Yes, I smoke and NO, I don’t think it helps the MS!! Plenty of studies suggest that smoking and MS don’t mix . . . but I haven’t been able to quit.

I think the best defense (that I’ve incorporated) for managing this disease has been:

- LUCK!!
- Reducing stress!
- Cutting out dairy & beef (in my late teens)
- Avoiding/treating infection immediately!!!
- LUCK!!

My neuro’s (several over the years) all told me that spinal lesions do not seem to respond well to the drugs we have available; CRABs, steroids, etc. I am also extremely sensitive and/or allergic to many meds, so I have never done any of them (including symptom mgmt ones).

So, I have had MS for at least 18 yrs, more likely 32+ yrs. I only count since I got the probable dx though ... since clearly they were right in 1991.

Cherie

Thanks Chemar. I will not debate those aspects with Chris any further on this thread, as I know it ends up just upsetting everyone. I will simply attach the links for Chris (or anyone else) to do their own research on the numbers I've quoted, and hopefully we can leave it at that ...