I guess....I have the same question for you. How did you know something was wrong? It sounds like you have a very full and normal life. Do all your friends know you have MS? Do they ever question your diagnosis?? So, you have not progressed much in 25 yrs? Are you on a DMD?

In my case, I had neurological (sensory) symptoms while in relapse that piled up.

I thought for years it was migraines. I took over the counter stuff, nothing worked.

I had pain in the left side of my face for a good 2 years (probably more), then my pinky and ring fingers started going numb at work.

It wasn't until I was under a lot of stress (work, house, relationship) that I got really bad. Woke up in what I called 'convulsions' (they were more like tremors I now know) and that's when I started to seek answers.

I had very severe vertigo x2, the feeling of a leg 'missing' (it still worked mind you), L'Hermittes Sign and Girdle-Banding (both were my 'hallmark' symptoms of MS - anything else I've experienced, down to the most painful, Trigeminal Nerualgia and Burning Mouth Syndrome, are conditions that can exist outside of MS, but TN is more common in folks with MS than the general population without MS).

I know I'm missing a bunch of what exactly happened to me during that limbo time of going off work to start seeking answers. I had symptoms come and go without warning. I was so 'ill' I couldn't work. I was depressed and just wanted to go to sleep and never wake up.

I knew the magnitude of the situation when I thought, "I've never been so depressed in my life". It's true. I don't imagine I'll ever feel that low again.

I came out of the 'experience' stronger and wiser though, and I thank my strong will and family for being there through it.

It's tough for people with very typical MS symptoms to get a diagnosis.. I count myself VERY lucky that, while it took a year or so, it ONLY took a year or so, and most of my symptoms were very non-specific to MS. Many try for years to get answers without luck.

Hi daisy.girl,

It was very obvious something was wrong. My husband traveled on buisness quite a bit, when he was out of town it was left to me to take care of mowing. We had a large yard, front and back.

One day I went out to mow (early morning). I made it half way through the backyard when my legs became weak and I felt like I would collapse if I didn't sit down. The rest of the day I spent sleeping. The next morning I felt fine, so I went to finish mowing the yard...same thing happened.

From that point on things progressed to what I now know as a full blown severe exacerbation.

By the time I saw my PCP I could barely walk, Bi-lateral leg weakness, I was numb from the waist down, I had tremors, pins and needles from the waist down, L'Hermittes, fatigue and pain.

My PCP examined me, said he could not help me and handed me a referral to a Neurologist. I was diagnosed within 3 months.

I had the same type of symptoms/exacerbation, but worse, one year later.

My friends know I have MS and I have never had a single one question the diagnosis it's self. I do get questions about the disease and how I am feeling/doing.

I am not nor have I ever been on a DMD. Have I progressed? Yes. Considering I can take symptoms as far back as childhood my progression has been minimal. My biggest challenge has always been my mobility.

Can I ask why you did not try a DMD? Are you still able to walk?

I was dx in Jan 2010, my MRI showed approximately 10 small atypical lesions. I really doubted my dx and I refused a DMD, and I began LDN. I had a repeat MRI in Oct 2010 (9 months from original)...it showed 5 additional lesions. So, at that point, my neuro said we needed to get aggressive, and I was afraid to do nothing. I just began Tysabri. I have only had one infusion. Now, I am questioning my decision.

I too had suffered for years with migraines. I started having a lot of other symptoms; however, my neuro just kept telling me they were all migraine related, then when I started having double vision and my hearing went muffled, I found a new Neurologist.....BUT still I never thought of MS. I was dx just 6 weeks from my initial visit to a new neurologist.

So, I too was dx very quickly.

In 1985 there were no DMDs. Betaseron was the first DMD to become available to the general MS population in 1993...by lottery. I did have a lottery number. At the time there were alot of unknowns about Betaseron since it was the first of it's kind. As my number came up I decided to wait and see.

Through the years I have simply decided I prefer to take my chances with the disease. I, personally, do not believe these drugs work as well as we are lead to believe. The disease is still not understood and I often wonder how is it possible to effectively treat a disease under those circumstances.

I don't walk right but I do walk and unaided for the most part.

However, I do like and use trekking poles when I will be out doing a lot of walking. My balance sucks and always has, trekking poles help to compensate and helps my endurance.

My thoughts and opinions on the DMDs are just that...thoughts and opinions. Not everyone will have my experience.

To use or not use a DMD is a personal choice and neither choice is wrong. Do what you feel is best for you. The choice you make is the one you feel the most comfortable with and the path that leads to the least regrets

Snoopy,
Can I ask about your lesions over the years? Do you have both brain and spinal cord, and have they increased?
I admire your decision. That was my initial response too, I did research the DMD, and decided the effectiveness was just not enough for me to put myself through. then when my lesions increased, I guess it scared me into doing something.....and I felt, if I am going to do a DMD, then I want the one with the most effectiveness.
Thanks for all your input!!

daisy.girl,

At the time of diagnosis (1985) I had a clear MRI.

The second MRI I had was in 2005, it was also the last one I have had. That MRI shows numerous c-spine lesions and 2 brain lesions.
The MRI report on the c-spine MRI in 2005 states "Findings are most consistant with patient's clinical history of Multiple Sclerosis."

Before you ask, if you were going to ask : My diagnosis was a clinical diagnosis based on a positive LP, neuro exam and symptoms. My neuro believed MS was affecting the spinal cord...he was correct.

Unless needed my neuro and I don't feel MRIs, for me, are necessary. We know I have MS and the MRI will not change my mind in using a DMD.

Always remember: Treat the patient not the MRI.

MRIs do not give the whole picture of this disease: some can be doing and feeling well and the MRI shows more activity, some can be having a relapse and the MRI shows no indication and some find the way they feel does match up to the MRI.

Thanks Snoopy....
My neuro told me at initial visit that he thought either MS or spinal cord compression; due to a very abnormal neuro exam....hyperactive deep tendon reflexes, positive babinski, positive hoffmans, positive rombergs, ataxia, nystagmus, absent abdominal reflex. I had an MRI 6 weeks prior (not according to MS protocol) that was clear......that did not sway my neuro's thought either.
He sent me for another MRI (that one showed approximately 10 small atypical lesions), went to Opthamologist (dx with Optic Neuritis), Abnormal SSEP......He dx me at my next visit.
Thanks again

get up at 7 am, work 10 hours a day in an IT dept for a large company, head home, take care of house/spouse/cat. Socialize with friends, exercise by taking long walks in my little town, will volunteer at courage center (it's a new thing, I start next week assisting with weekly swimming lessons), I'm on a bowling league through work (bi-weekly madness is what THAT is) and otherwise generally experience what appears - outwardly - to be a very normal life.

I was diagnosed in 2001. Presenting symptoms were mild sensory, then Lhermitte's sign. LP and MRI confirmed and I got the diagnosis. I've had few if any symptoms since. Am not on a DMD now (was on avonex, copaxone, but quit them because of complications). Recently, I have some 'shakiness' in my hands but that seems to be remitting. Recent MRI shows no progression from last scan about 5 years ago.

It's a wacky disease. I take nothing for granted because I know how it can go, and I know it can change.

becca