How did you get diagnosed with MS if you have a diagnosis and how long did it take?

Hi,
First off I don't have a diagnosis of MS, unless you count the people I have met over the years who have it and are convinced I have it too... which doesn't swing with the medical community. (: I have been told I have "many interesting symptoms to monitor" all of which get called coincidence and given their own individual unrelated diagnosis if the doc even writes it down at all. They have been "monitored" for well over 10 years now. I have lived in several different states and my GP's don't communicate/request charts or if they do they can't read the handwriting, and I get the feeling most don't really believe me.

So my question for you is, what did it take to get diagnosed? How many years, who did you go to/what kind of specialist, and did something dramatic happen or did someone just finally connect the dots? Did you need an MRI with contrast? Any other helpful tests you had done?

I wrote to the local MS society to get a referral to an experienced doc, anyone on this list in Hawaii/Oahu and have any further advice? I'd like to at least have someone look at my entire collection of symptoms and rule out MS, Lymes, fibro, Lupus. How do you get past the gatekeepers at the primary care office and what kind of specialist did/do you use? (had a couple neurologists, they called my symptoms coincidence) Should I start going to the ER when I am in real bad pain and see if that gets someone's attention? I have had the docs and physical therapists ask why I don't go to the ER when the pain gets super bad... I don't like ER's, they charge a ton of money for 15 minutes attention from an on call guy who half the time appears to not be paying attention, and they make you sit there for hours twiddling your thumbs til they give you a shot that makes you puke and pass out. Not my idea of fun... So generally I just go to bed and hope to sleep even though that makes some of the pain worse. Who knows, maybe it is just a coincidence. Have had a couple car crashes that could have influenced the neck though they didn't hurt right away. Did get a "peripheral neuropathy" diagnosis but the current doc says that doesn't mean anything. Treatment was Lyrica which is related to Neurontin, current doc doesn't want me to take it. It worked but made me real tired. Corticosteroids also help a ton but you can't take those all the time.

What is your story?

It took me 3 hours to write this email cause I kept forgetting words, making typos and getting confused! Argh... beats trying to talk though. The internet is great, without it I would lose my social contacts entirely. I hate the phone, and avoid leaving the house.
Kate

Hi,
That is a good idea keeping notes from day to day. I was supposed to do that for migraines but almost never remember... am very scatterbrained. Used to be honor roll student/spelling whiz but now I can't do simple math, spell things wrong or substitute similar words, and cannot for the life of me remember what I was thinking 3 seconds ago on some days (happens over and over regardless of activity or intention to focus), then other days I have amazing memory and writing skills. Often can't spell simple wards though, I mean words. See what I mean? I feel like the guy in Memento, have even done the thing where I was trying to remember something but couldn't find a pen to write it down and by the time I found it forgot. Bonus: I can hide candy or 20 buck bills and forget about them which sort of cheers me up later when I find them. Surprise! 40 bucks in my pocket...

So.... I don't know which of this is relevant. Just want to know what is wrong with me. Maybe it's chronic fatigue syndrome, lupus, Lyme's or fibro. Just was reading about the eye thing and saw the optic nerve symptom was linked to MS which set me off trying to rule it out.

I can't remember precisely when things started going bad. My straight A student days stopped abruptly in high school senior year and I developed severe depression and inability to concentrate so that caused my docs to write off all my symptoms as mental for years. I have had 2 auto accidents. One was before the pain started by about 5 years and a few years after my mental problems began. The other was after the pain started by about 10 years. 5 years is a long time but still most of my problems are written off as accident related. Most of the mental stuff simmered down over the years except I still get depressed, but not as bad most of the time unless am bedridden with severe pain. At least I have a reason to be depressed now that I can understand and deal with. Since I wrote off the pain and headaches as mental for about 8 years myself I don't really know when it started but friends I haven't seen in years will ask "you still get those headaches?" which helps me date it back to the early 90's. I did a bit of "self medicating" for a while too. (: Didn't work of course and just made the docs more likely to push me out the door. Plus then I hung out with AA people who told me I couldn't even take ibuprofen or go to the doc because they said my muscles were spasming in a subliminal attempt to get pain pills. Couldn't turn my head for 6 months. I stopped hanging out with them and got some muscle relaxers and took 1200 mg ibuprofen every 4 hours during the day. That's what it took for a year before I got ulcers and then had to live with it for a few years.

I get pain all up and down the right side including the eyeball, jaw joint/TMJ, teeth, neck, shoulder, elbow, upper forearm near the elbow, wrist, and hand with tingling and numbness or electric shocks in the outer fingers. The pain continues down the back and is especially bad at the pelvis. That usually runs down the leg and the knee usually hurts, sometimes the feet depending how cold it is. Not a problem here, it's too hot! The pain comes and goes and often I can't turn my head. It comes with muscle spasms all up and down the spine up into the jaw that can go on for 6 months but usually last anywhere from a few days to a few weeks. Can't stand anyone to touch my back while it's going on. Can't stand any pressure on the shoulder muscles so can't wear a bra or purse strap especially on the right. Oddly having pressure overall helps, like from a wrist or knee support or lumbar support/corset.

I go to the eye docs a lot due to nearsightedness and keratoconus, which is a problem causing an irregular cornea. This also causes double, triple, even 13 images that overlap or sit outside the "real" version. Lines in the road look like a V or worse. Oddly that comes and goes which it is not supposed to do with the frequency or extent it does for me. about a year ago the eye doc noticed that my optic nerve in the right eye had been damaged as if I had bad glaucoma, but I don't. He couldn't figure this out so it's being "monitored", the current eye doc here took photos to document its progression-now in both eyes. I moved before we could do a visual field test and didn't do it yet here. It's an expensive test and IMO not worth it since there is nothing they can do anyways til they know what caused it. This is how my vision looks at night:
http://www1.fotolog.com/electrokate/7653601
I am still legal to drive. Scary huh? I don't drive at night, daytime is a lot better.

I always test well on balance at appointments and my strength is usually symmetrical though reflexes are not and are either entirely absent or hyperactive from visit to visit. Yesterday I walked with my husband and it was like I was drunk, I was all over the place and losing my balance. If I stand still like in a crowd sometimes I suddenly lose my balance and fall into the next person for no reason. Often limp badly and lurch violently, especially in air conditioning or when it's cold, or if I am physically active several days in a row. The more days I am active the worse it gets. Sometimes my foot drags, usually on the right side. I can't get it to walk normally even if I concentrate, it just skims along the floor and trips on things. In 2005 went to Mexico and tried to walk like that on cobblestones. That was interesting... sure is hard to use a can on those, too! Usually it's fine though. Occasionally my knee just stops holding me up and I fall. I used a cane living in the pacific nw but rarely need it here. We live in a tiny studio apartment here so it's not as much of an issue, most days I don't go anywhere and never have to walk more than 20 paces and I think the heat helps. I still walk into furniture though. I can't do the dishes cause it's too much work standing and looking down at the sink hurts my neck and back, plus my vision sucks so the dishes have to be cleaned by touch, which doesn't always work out real well (:. Ditto cooking/chopping food, plus I forget it is on the stove even in this tiny apartment and almost always burn the food. Timer doesn't help, it rings and a second later I don't remember it. Even the smell of burning doesn't necessarily connect in my brain with the need to take action. It's like being in a fog.

I can't stand heat, it makes it hard to think and I get more clumsy, nauseated and confused. Where I last lived I was cold for months and had more of the foot drop, deep foot pain, and shaking uncontrollably. People keep telling me that I will adjust but the only adjusting i have done is now I think 74 degrees is freezing cold! (: It's 93 and 60% humidity during the day most days in my apartment. If I had the energy I would go to the beach and freeze my butt off (:. My body temp is 97.3 both here where it's hot and in the winter in the Pacific NW. That's more a fibro/CFS symptom I think.

I drop things a lot. I will walk into a table and 5 minutes later do it again, have a constant bruise on my thigh from it and the whole thigh hurts like one big bruise cause I keep doing it. I walk into doorways hitting my shoulder pretty often. The more stressed or hot I am the more frequent it gets. I also get confused, can't remember how to talk so that last weekend I tried to ask where the nearest gas station was and it came out "which turn to Aloha?" (which is the name of the gas station) or "what do I turn for Aloha" was my other question. Three times I have had to sit in the car for a minute trying to remember how to open the door and get out. Sometimes I talk so weirdly people ask what country I am from. I couldn't figure out what to do with my wallet while going to the bathroom (had shorts on with tons of pockets) so went home to pee. Those are pretty extreme as an example but often I try to talk and it comes out like that, I can't communicate and/or I stutter and I can't think. Other times I am fine.

I get lost driving pretty often and can't keep the names of the streets straight but for Hawaii that is kind of normal (: Go to google maps and look at the names of the streets in Waikiki... ugh. I forget things at times that make no sense like in the middle of knitting I forget how to do it. Just like that, boom, it's gone. Have to look it up online and relearn. Sometimes if I sleep on it the memory comes back.

I get migraines a lot, up to 6 days a week, then a week of headaches or nothing, sometimes 2-3 weeks of almost nothing and then they come back. Some are PMS migraines and others triggered by MSG. Might be totally unrelated. Lately when I get them my right eye shakes. It's usually on the right side, very occasionally on the left. It might be the migraines are doing a bit more than just hurting, maybe they are messing with my brain. For a few people migraines are actually tiny strokes, but it's rare. A neurologist did an MRI for that and for tumors, didn't find anything. She did not use contrast, which would have been helpful for other things.

So lets see... inability to remember names, short term memory loss, stuttering, painful muscle spasms lasting up to 6 months long, tremors, weakness, foot drop, guts are a mess...Pain tends to be worst after illness or other stress, and I get sick easily and often. Have had serious pneumonia 4 times at least and bronchitis about twice a year, lung function is at 50% when I am well but that could be long term damage from asthma-have had allergies all my life. Is constant thirst relevant?

Went to a rheumatologist and he said I definitely don't have arthritis which is funny cause it showed up on my spinal MRI though in a minimal way. He didn't believe in fibromyalgia. My current GP said he doesn't believe in it but today I looked at my chart while he was out and it said I have fibromyalgia.... ***?



Thyroid always tests fine as do kidney and liver, platelets low but all other blood cell counts normal (looked in the chart for a while). Symptoms of anemia but test fine. 2 of my immediate family members have Lymes gotten at the family cabin in N Minnesota, it was around when I was there before all this started but was extremely rare in humans back then. Nobody will test me for that as they believe it's too unlikely and is untreatable if chronic so pointless to diagnose... I don't agree. Anyways I want a better diagnosis than "chronic pain". Arthritis-both juvenile onset and adult of the rheumatoid type runs in both sides of my family affecting mainly females (I am female) I have Lupus like sores. Or heck, maybe I am still mentally ill (: The women on my Dad's side of the family are like me. They don't have a diagnosis either except juvenile onset RA.

I only got a job because I lied and said I was fit... Hadn't been able to get a job for years prior and was denied for any kind of disability due to a lack of a qualifying diagnosis. (Two doctors think I am just a lazy hypochondriac who wants to sit home all day eating bonbons and watching tv. I hate watching TV or movies, ups the pain and plot is confusing, plus often can't tell the faces apart. Can't hold up books as one or both hands cramp up, neck hurts if I look down. But they told disability that all I want to do is watch tv and am lazy and probably an alcoholic or drug addict) Most of my friends here are athletic and super buff-they surf, dance, bike, hike, swim, scuba etc so this really sucks. Definitely would rather be fit and join them than lay in bed in my 90 degree apartment watching the ceiling fan. And getting on disability would have been no slick move, I would have had to live on 572 bucks a month. Gee. That's 1/3 the cost of your average studio apartment. Big windfall! How am I supposedly going to afford to be an alcoholic on that? (: So I work 2 days a week for slightly less money. I clean aquariums in offices and homes. Many days I just do one tank and go home exhausted and sleep the rest of the day or take a 3 hour break. Boss wants me to go full time... ha ha ha ha ha.

Also I'd be homeless if I didn't have my partner to take care of me, which gives me incredible guilt. I feel like a burden and like I hold him back from having fun. After a movie, work, walk, shopping etc I am so exhausted I often sleep 16 hours straight with only a break to eat or brush my teeth-cause my husband makes me otherwise I wouldn't even do that. Anything physical or stressful knocks me out cold. I am 38, 5'9 and weigh 111 pounds despite eating things that make most people gain weight, and get told all the time that I just need more nutrition and exercise, everyone has so much advice on this topic including my boss who doesn't believe me that I can't do heavy lifting. I don't really get better not doing heavy lifting so he's part right (:

I don't smoke but used to (quit 2001) and occasionally have one or two drinks if my husband drags me out but I hate feeling tipsy so that's about it for drinking. I already feel clumsy, nauseous, stupid, tongue tied, emotional and confused, I don't need alcohol to get like that. (:

I don't know if that sounds like MS or something else. People who I have talked to in person who have MS have said it sounds like early MS to them. But it could be other stuff or maybe is just a coincidence. My husband is also really stressed about this, he wants someone to "fix" me and is very angry at my various doctors for not having more answers. I don't like the rest of my family worrying either. I just wish there was an answer of some kind I could tell them. and which I could tell myself. I don't know if that would really help but it sounds better than what is.

Thanks,
Kate

I received a tentative dx in 3 weeks and a confirmed dx  within 5 weeks which I am finding out is quite unusual.  First they said I had inflamation of the rib cage (I did not), then received a dx of shingles (did not have that either), then went to an er where they did a MRI of spine and told me I had a herniated disk.  It turns out that was incorect too.  My pcp then odered a brain MRI and then told me I had ms and made a referal to a neurologist.  Within 2 weeks I has a spinal tap and started on steriod treatment.  The neurolgist then ordered one more MRI of part of my spinal cord that was done with dye.

ok, notebook for diary of symptoms is on the list of things to do today...

The damage to the optic nerve... no eye doc has ever found glaucoma. The last 2 eye docs said there was nothing they could do medically to stop or repair the damage to the optic nerve/disc as they didn't know why it happened, so they are going to just monitor it and see if it gets worse. I did a visual field exam about 3 years ago and tested fine. I am seeing an eye doc on friday so will ask her about it. I worked at an eye surgery center and their specialists did thousands and thousands of dollars in tests on me for a couple years and decided nothing could be done that wouldn't make something else worse. So that all seems kinda pointless.

It's not like I want to have MS... (: In the past few years went to a couple neurologists and a physical medicine specialist, got MRI's of neck, lower back and brain. They didn't show MS so you are probably right. Was tested for carpal tunnel with some kind of electric conductivity device which showed weird results, no carpal tunnel but some other abnormal thing. The neurologists were pretty bad, neither could remember from one visit to another why I was there and didn't seem to have anything in the chart regarding what they prescribed or decided from the last visit. The physical medicine specialist was great, he's the one who gave me Lyrica which really helped and seemed to pay attention and try to figure things out. My current GP is kind of odd, always in a hurry and often gets confused. I like him but he tends to get distracted and interrupt or not listen. Every other visit he wants to take me off all my meds and try something else. That kind of drives me nuts.

So maybe I am just suffering late effects of the auto accidents. I hate taking pain meds or muscle relaxers and wish I had a diagnosis with a treatment plan preferably not including those drugs. Would like to at least have something I can tell people where they will not think I am making it up... most can't believe I would be messed up from a car accident in 1990 and that I am legitimately exhausted half the time. I am on prozac which does seem to cover the depression pretty well, and I try to not remember the pain from the day before or think about the future, that really helps with the depression but doesn't help talking to the MD's (: So I will do the diary. Been meaning to anyways for the migraines, and because of the weight loss, that needs to stop.

Thanks for your advice. From what I had MS sounded pretty reasonable and I also read it takes years to get diagnosed but it sounds like it's not that hard to figure out. I wish I knew if the neurologists had checked for that.

Kate

Only been tested for the arsenic I ate when I was a kid. They chelated that out supposedly. Have also ingested cadmium yellow paint, played with mercury as a kid, cleaned up asbestos with no gear (boss didn't tell me) scraped lead paint, got tricked into drinking a glass of turpentine once (doesn't taste half bad) and I think there was another toxin in there somewhere. So yeah, that would be a good thing to look at... (: I paint and suspect the pigments are absorbed through the skin as well. No longer use turpentine, only water soluble oils. They still have a solvent I react to in them though most people don't have a problem with it. Same stuff as is in simple green.

Wish I could remember the other heavy metal. Oh yeah, I also keep orchids and spray them often but have almost always used supposedly safe things like neem and plant oils. Supposedly the fertilizers are loaded with nasties though.
Kate