Multiple Sclerosis (MS) Support Group

Wow, that's a tough question...I still wonder if I have been truly diagnosed? In 1997 I had an MRI done because of many different symptoms and diagnosis'. It came back with lesions and they said it was suspicious for MS. I was diagnosed with fibromyalgia, Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Depression, Anxiety, Hypogammaglobulemia and received intravenous gamma treatments for 3 years, then I was having some headaches so they did another MRI in 2004 and said it looks like suspicious MS. Then in July 2005 I was in the hospital for a week with stroke like symptoms, paralysis, speech problems, etc...and they ran tests and said it looks like it might be the MS. Then in Sep. 06 I found a Neurologist who said it is "Probable" MS and ran tests and finally started me on Provigil and Copaxone. I have been to H--- and back with too many doctors to count and I don't think anyone in my family even believes me anymore.

How was I diagnosed....well last year about this time my daughter caught the flu and when I got it, it knocked me down for like five days. When I took her in to be seen the doctor asked if anyone had been sick and I told him yes me and for five days. He just looked at me and said that does not sound right. So I just took it with a grain of salt and kept going. Only to find myself always gettting sickm no matter how healthy I was. I was working out for two hours a day, eating healthy, taking my vitamins; and here I was really sick. It got to the point that I started having vertigo really really bad in and out of the doctors four times in six days and nothing. They said they thought it was an inner ear infection and nothing they could do. The next day it only got worse and went in to the ER to be immediately be taken and put in bed and they ran a CAT scan. That was when the doctor told me that my scan came back abnormal and I needed to get in and get a MRI done within the next 48 hours. So the next morning woke up with profuse vomiting and vertigo, so away to the hospital I went. Again only to be taken straight back put on IV fluids and be seen by my neurologist. She told me that I either had MS or Cancer. I was so drugged up that I was like OKAY. Here she was going to brace me and it did not even bother me. So they did the MRI and came back the next day to tell me it was MS.I was like okay can I go home (Mind you my husband was on a six month deployment in the military, I had two children that I could not even take care of let alone be left by myself.)They let me go home but made me promise to come in on Monday for a spinal tap. Came in and did that only to get the final diagnosis two days later! MS it was! My husband is awesome, could not ask for a better man. But then my family on the other hand were in denial. So that is my story!

one day in april 2005 i was riding my bike along beach drive with a pedestrain and car coming toward me in the other direction - i relaized i was seeing two of each and it was difficult to decide which to try to avoid having an impact with - i biked home safely and once there, thought it had stopped - but later that day when i was telling my husband about it, i looked out through our rear window and across our yard and was seeing double again - turned out the double vision happeend when i was focusing beyond about 8 to 10 feet

saw my promary the next day who sent me directly to an opthamologist (imagine - driving myself around with my hand over one eye!) my depth preception was way off too

the opthomologist said flat out that double vision always means something is wrong - could be a brain tumor, brain cancer, ms or lyme disease -

i was pulling for lyme disease but was diagnosed with ms a few days later after i had a complete cns mri - had heard those letters all my life but never really took the time to understand what ms was until it hit me

double vision lasted about 3 weeks and i've had 2 relapses since then and now rely on a walker to get around - maybe i'll sell my bike

I began having severe headaches when I was in my early twenties, I think that's when this started for me. My family has a history of migraines, so doctors assumed it was that, but pain never controllable and I actually took a leave from college because of them. For the next 10 years, I ate Excedrin migraine daily, and had "burners" running up and down arms and legs that were attributed to aura. Sometimes, I would notice "dead" patches of skin and right eye would blur up...also assumed it was aura. This summer, I was in bed with headaches after a stressful house renovation, when I noticed my leg twitching...and my eye never cleared up like it normally would. A month after the incident, and after HMO referral hoops, an opthamologist sent me for an MRI. That's when they found lesions. Had a LP and evoked potentials since then. I assume they weren't normal because my neurologist asked me what medecine I want, wrote me a prescription, and sent me home. Now I have Copaxone in my fridge and trying to figure how to organize my life around symptoms (trying to run after a toddler on a stiff, numb foot and scour for things suddenly and inexplicably misplaced).

Like tr27, I experienced double vision. MRI only had one lesion, so we kept an eye out and did other blood work to rule out viral infections etc. Then my right thigh went numb and I (so embarassing) lost bladder control a couple of times, lumbar puncture done, but of course came back normal and then a year later (this spring) my legs would get pins/needles whenever I bent my neck forward, repeat MRI proved now to have multiple lesions and now I'm here reading about you guys trying to learn.

hmm dx with epilepsly in 2002,,, then in 2005 had what at that time the emergency room dr.. said looked like ms after doing cat scan.. sent me for emergency neuro apt..sigh..yep to my ep neuro..who told me to walk accross the room..while holding my arms out eyes closed..sure...pick me up when im done doc... threw me on blood thinners at a cost of 1800 for 18 months.. told me i had , had a small stroke there was no way i had ms... and booked yet another MRI.. have i ever mentioned i hate MRI's.. finally i think it was back in november i got ticked because he had not read the MRI nor the previous one..i had in 2002.. so he actually took the time to read it.. called me said it looked like mild ms to him... refered me to ms clinic.. i had one clinic day..booked another damn MRI.. yep still hating them.. they called me to come in.. told me i was almost out of the rr stage and well into progressive.. no other tests are needed.. lesions on brain and spinal cord.. i was easy to dx.. no crab therapy for me... just manage symptoms..
unless i have another ex.....cant spell the rest they will see me again in a year....most likely for another damn MRI..sigh.. if i experience any problems.. call them... and oh have a nice day..grin.. and that was that...

My road to diagnosis was bumpy to say the least…I was only 23 years old when I had my first contact with MS. It was pretty scary actually. I woke up one morning and the vision in my eye was gone… well not totally gone, but it was very dark in the center of my eye and my eye hurt like crazy… I called my eye doctor and he told me to “come in immediately”. I went through a battery of tests and it was determined that I had Optic Neuritis. I was immediately given a round of steroids IV and referred to a neurologist. The next day I was scheduled for an MRI and had more steroids. I saw the neurologist the following day and (had more steroids) he told me to go home that my eye was cleared up and that the other symptoms I was experiencing (numbness in my legs and hands was in my head). I was 23 so I believed him and went home. After I took the steroids my eye problem had cleared up and I was feeling better so all was fine…Or so I thought… in December of 1999 I was at home getting ready for the holidays and I fell for no reason, and when I tried to get up my leg was numb and tingly. My toe hurt like crazy and I couldn’t move it so I went to the doctor….I told my GP about the numbness and tingling and she sent me to the Neurologist again... He didn’t order any test and told me I was making it up and that I should go home and rest and I would be fine.. I knew there was something wrong with me so I found a new doctor. I explained my symptoms to the new doctor and he immediately ordered a MRI. He reviewed the MRI and told me that the results we indicative of MS, but wanted to run one more test just to be sure. He sent me for a spinal tap. I went for the spinal tap and had a really hard time with that. I had to go back in because I was getting really bad headaches and needed to have a blood patch placed and lay on my back for 3 days. I went back to the Neurologist and got the result … MS. At least now I knew what it was…he gave me steroids to relieve the inflammation and I was feeling so much better. I had a little lingering numbness and I was tired (MS fatigue) but all in all I was fine for about 4 years and then I had another flare up. This was about 6 months after my son was born. During my pregnancy all of my MS symptoms disappeared. I had so much energy and no numbness at all (if I could be pregnant for ever maybe my symptoms would go away). I was again treated with steroids and that “kicked my symptoms into remission”. I again was fine for about 3 years and am currently experiencing another relapse. I am numb and tingly form the neck down, but the fact that I can’t feel my legs is the worst. I am currently being treated with steroids and am going to have another MRI. This is just the way it goes I guess a rollercoaster of feeling good the feeling bad.
You may have noticed that I don’t mention having been on any of the “MS drugs” I took Copaxone for a very short time, but it was so expensive that I cannot afford it( and who wants to take a shot every day OUCH!). Insurance doesn’t pay for it and I can’t afford it on my own. I have made a personal decision to treat my relapses instead of taking one of the MS drugs.

to quote CarolA: 'Wow, that's a tough question...'
dx'd in 1998. That gave my oddities a name. I still remember staring at my diagnosing neuro 'What is it?. I read, googled, I learnt.
I lived/am living it.
For years, mid '90s, I stumbled, I learnt my gait was off - explained why i could barely walk. I slept a lot; at home even at work. I couldn't think well or gather thoughts. It was difficult to type or write. In my, now previous, job these were important to my work and clients. I did not know why! Until the dx. Years of disabling behaviour before that statement. Years without being able to play with my daughter.
I had hand tremors, Optical Neuritis, CAT scan, MRI, tests, tests, tests. They wanted to be sure before dx.
And here i am, still reconstructing my life.

I talked my mom (age 75--has rheumatoid arthritis) into going on a road trip with me in June 2004, we left from Pueblo Colorado on June 18 and meandered through wyoming, down into Utah-stopping to stay with Lyla, her best friend and fellow cheerleader in High School, for a few days. I was suffering at that time with pretty severe constipation (worse than my usual chronic constipation) and was taking stool softeners, fibercon, laxatives and finally resorted to Fleet enemas about every three days **notice** this is relevant to my diagnosis--sorry if it offends anyone. Also, as time went on, pain and a feeling that my right shoulder was trying to become disjointed gradually worsened. In addition, I frustrated myself and probably my mother by being an irritable b**** the whole trip. I felt uncomfortable and extremely tired for several weeks even before the trip. We made it across Utah, Nevada and into SF California, stopping several places for days in a row to visit her old friends, finally ending up in Los Angelas at her sisters house. I started dropping things (broke my dad-gum $750.00 camera, tripped and fell, and was even having trouble getting food from the plate to my mouth!
My favorite cousin and I sneaked to an ER one night (didn't want to worry my already worried mother) and after an MRI and neurological exam was diagnosed with MS. I got on a plane the next afternoon, leaving my mom with her car in good hands with her sister, and was admitted to a local hospital in Tucson that evening. By the time I got into the ER I was having trouble holding my head up, swallowing, couldn't control my right hand and arm and was staggering all over the place. It was hard to talk, my tongue wouldn't move right and I kept biting it, I also was aspirating thin liquids if I didn't keep my chin tucked and concentrate. I rec'd high dose steroids, reglan, iv fluids etc etc for five days and was getting better by the time I went home. They think I'd actually had MS since 1991 when I had bilateral optic neuritis. It fits when, in retrospect, many of the transient but distressing problems I've had since then could have been symptoms of MS!!

I was working as a 411 operator, sitting and typing all day long. My pinky on my left hand kept tingling and going numb....Just the one finger! After a couple of weeks of this, it finally went to my thumb. From there it traveled up my forearm. At this point, I got an appointment with my general and he sent me to a neoro doc. Who done this shock the arm and see what happens test...LOL! This test came back neg. and he gave me pain pills and said it will go away. This was March and April of 2005.

The first 2 weeks of September of 2005 I just could not get moving. At this time I worked as a desk clerk at a local hotel. I was allowed to sit and I was studing to do Taxes during the tax season. The problem was that every time I stood up...I HAD TO GO!!! Only I could not get to the potty fast enough! After having to take a change of clothes every night to work this two weeks of not even wanting to get out of bed was worring me. I also had a headache that just wouldn't go away.

On Friday I went to see my general and he scheduled me for a MRI the following Wednesday. On my way home from work that night, I was talking to myself about things I had to do the next day. In mid-sentence, I had traveled about 1 mile and was on the same word. I lost that mile completely including the thought process! And, I could not finish saying the word I was thinking.."newspaper". It just would not come out my mouth right. And neither would the next word. I was in tears by the time I got home.

On Sunday Sept 11, 2005, my husband took me to the er. The doctor done an EKG, and a CAT scan which both came back normal. So he said I had a migraine. I told him that I had migraines all my life and this was NO migraine. He gave me a shot and sent me home.

On Tuesday morning my twins missed the school bus because I just could not get up. I took them to school and stopped at the bus garage, I am a sub bus driver, to talk to some of my friends. One of them kept laughing at everything I said. When I asked her to stop laughing she replied, "Quit talking like Daffy Duck and I'll quit laughing!" My other friend looked at me and asked if my face was numb. I said that the left side was numb and she told me to go straigt home and call the doctor. I tried to call my husband at work and if it weren't for caller ID his boss would never have been able to tell him I needed him to call. I was told to go back to the er and the SAME doctor was on that told me I had a migraine. I told my husband to stay quiet and let the moron try to understand me!...LOL! He couldn't for about 5 more hours and thats when my speech just came back.

The MRI was the next day and I got the results that Friday....Most likely MS! He sent me to a different Neoro and I like her alot. But it took another MRI and the Spinal Tap to get the DX and that wasn't until Dec 12, 2005.

I guess I was lucky that it did not take a long time to get dx'd. After thinking about all the systems I realized that I had a major one in 2001 on a field trip with pre-schooler...I got majorly overheated and about passed out. The parents and teacher on another bus had BOTTLES of water and would not give up even ONE of the bottles until my boss went and just toook it...LOL. But thinking back to the way I felt all that day up to that point I think that was the very first sign.