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Conditions and Diseases > Multiple Sclerosis Forum > Need Answers about Multiple Sclerosis
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Q: Need Answers about Multiple Sclerosis
asked by: LissaM on June 1st, 2007
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My name is Melissa. 17 years ago I was scalped while riding a go kart and almost died twice. I was in and out the hospital for about a year with nine different surgeries, including having a hole drilled through the top layer of bone in one place on my head. Don’t ever do that it hurts all the time like a ice pick being hammered in your head. I started having all kinds of problems with muscles, coordination, eye problems- lots of jerky movements when I stand up I would be dizzy and have to sit back down or fall down my whole body would go numb and I get migraines where I go throw up. So a year later, they put me through all the test and then finally a MRI, they had put me in the hospital over night the night before. They had left my chart in the room and inside it there were instructions on how to deal with MS for me and my husband.

The next day I went to have the MRI, it was freezing in there they wouldn’t give me a blanket I was shaking the hole time. They did the test on my head. A neurologist came to the hospital and did a bunch more test telling me to do certain things and I couldn’t curl my toes under no matter how hard I tried pretty weird. He wanted me to make an appointment with him on the following week. And I waited for a week to get the results, I got the results they were negative. I never went to the neurologist, I figured, Oh I must just be a whimp.

I hit my head on everything cabinets getting in and out of the car door knobs I have no feeling of what is near to my head or I’m an fool. A couple of years ago I lost a piece of bone out of my head and that hole hurts all the time also. I think I had hit it on the closet try to get something off a shelf. The area was swollen for about 6 months and then a piece of bone worked it’s way out of the skin. I don’t really like going to doctors so I didn’t go.

Through the years I have had problems and the older I get the worse. I am 43 now and lately things are not good. I started having eye movement pain, and then I was sitting at work and al of a sudden a black curtain came over my eyes for a split second and then double blurred vision. I tried to stand up and felt dizzy and sick so I sat back down. My eye were out of control and felt like they crossing and trying to jump out my head. This lasted for about 4 minutes. Then I started seeing the colorful spots- a blurry oval with color around it.

The eye problems continued for a week not even being to sleep at night because when I would close my eyes it was like I was fighting to keep them closed and my eyeballs felt like they wouldn’t quit moving it felt like they were just rolling around in circles uncontrollably. Then the restless legs at night is a problem too. I went to the eye doctor for full exam. He said my eyes look good just a few floaters in the right nothing major. So he said get a thyroid test.

I was sitting on the couch watching TV and suddenly got several sharp pains in the upper right side of my head felt like someone hit me about 4 times last about 1 min each and then my arms and legs felt like dead weight, I layed down on the couch and fell asleep for about an hour and a half.

Last Saturday May 26th I went to help set up for my daughters wedding I sat down for a few minutes and when I stood up I felt dizzy things started to turn black so I sat back down then my legs started to feel real shaky and could hardly walk. I wrote it off as being nervous about the wedding.

Then Sunday May 27th I woke up and could hardly walk my legs hurt so bad. Then Monday night I noticed from my knees down to my feet were swollen and the muscles were tight and cramping and felt like they were ripping apart and you could watch my muscles jump. This lasting for about 4 days most of the pain is gone except for my hips knees and some pain in my lower legs and lower back when I move certain ways.

I have been constipated for about 3 weeks and I go pee about 20 times a day when my bladder is almost full and I start walking I start having pain above my pelvic bone and then I HAVE to go pee not painful until the very end of the stream. I get up about 2 or 3 times a night. Or be in pain when I get up at 6:30AM and can barely walk to the bathroom. Well I am not constipated now Wed May 30 I got the poops about 6:00 PM and it lasted till about 11:00 amodium didn’t help.

I have never even had heartburn, Now every time I eat about 15 min later my whole stomach and intestinal region starts cramping up and feels like it is on fire that last for about an hour. And I get the hiccups at the drop of a hat several times a day every day. From day to day and minute to minute I don’t know what is going to happen next. This is a book sorry it’s so long. I guess I wanting to know should I pursue the thyroid thing or mention the MS thing to the doctor?
I need an opinion.
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warguppy
replied on June 16th, 2007
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By All Means Yes
You need to get a different doctor. Not all doctors are competent. The first neurologist I had looked at my MRI and said "I know what the problem is, now tell me your symptoms and I'll just confirm it". It took 5 neurologists before I found one that actually did the tests needed (nerve conduction study, etc). Yes by all means mention anything you think is even vaguely appropriate to the doctor.
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joe73
replied on July 4th, 2007
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Some Advice, Find a Map
If this were me-here's what I'd do, find a map, take some time off of work, and plan a trip to the best hospital you can find. (I know...difficult...treat this as if your child had an emergency).
If you are having even half of the symptoms, I'd still say this.
Something is definitely going on, and once you lose parts of your health, they usually don't come back. The doctors might tell you some scary things-but whether you know what is happening or not, getting a diagnosis doesn't make you have an illness-you already have it--it just means you can plan for things and treat them, manage the illness better. There might be something out there that can offer you relief.

Also, if one doctor doesn't know something or won't spend time to figure it out, find another. Some doctors are more dedicated to their patients.
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LissaM
replied on July 6th, 2007
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babinski's this is the thing where if you run something from heel to toe on the bottom of your foot and your toes go up instead of down, right? I have that on both feet, but I noticed that the toes on my left foot are numb somtimes. I also stick my toes up rather high when I walk, probably because I have trip and almost fallen several times.
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joe73
replied on July 9th, 2007
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That's one sign of neurological problems, but only an MRI can tell you what is really happening. It can tell you where the scars are at (if there are any) which ones are old, which ones are happening now....how many.

I will repeat myself, even if the doctor's can't help you right now, if you hunt around and find one who you can form a relationship, then, if any of the latest stuff comes around, you have a way of getting it. Look at the doctor's background-coming from a large research hospital is good. Also see if they follow Standards of care. It means that they follow some sort of procedure or guideline for diagnosing and treating diseases.
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LissaM
replied on August 2nd, 2007
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Went to the doctor Going for MRI Monday the 6th. The only thing wrong on blood work was neutrophils, and absolute neutrophils were too high.
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LissaM
replied on August 13th, 2007
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Ms Questions
They did an MRI of my head only and it came up normal, so they said it was probably Fibromyalgia. It is good nothing showed up on the brain.
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LissaM
replied on August 22nd, 2007
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Ms Questions
I had MRI done on head and it came back normal. Doctor is saying it could be fibromyalgia or maybe Parkinson's. Every muscle in my body cramps up constantly and it is making my joints hurt and it is getting hard to walk very much. I can't get my muscles to relax no matter what I do and the fatigue is doing me in. Back to square one. He gave me celebrex and ask me if I thought an anti depressant would help, he's the doctor I don't know what will help. I told him something that would knock me out 24/7 would help. LOL
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