View Full Version : Anyone here with Multiple Sclerosis? I have questions!
sdmay3
06-29-2004, 09:05 AM
I am in the process of trying to find out if I have MS. I am wondering what was going on with you when you realized something was wrong and how long it took to get a diagnosis.
Last year I was diagnosed with Fibromyalgia. I started having major memory problems, loss of balance, widespread pain, fatigue, etc. All of my blood tests are normal. They have tested me for EVERYTHING!!!
Last December an MRI of my brain was done that showed 3 different plaques. I was just retested last month and now all the plaques are gone. My neurologist said the only way for those plaques to disappear by themselves are if they are caused by MS. But then he said he doesn't think I have MS because my symptoms don't fit. He told me that all my problems are being caused by depression. After I went off on him he referred me to Ohio State University Hospital but they can't get me in until December.
Last Friday I ended up in the Emergency room. My daughter accidentally tapped my foot and it sent electrical type pain up my entire leg. Then my whole leg went numb. After awhile I started having muscle spasms all over my body. At the ER they acted like I was crazy. The did some blood tests, an ekg, gave me 2 attivans and sent me home. Now today I bumped my arm on my desk and got that same type of pain up my entire arm and as I type this my arm feels numb and is tingling all over.
This not knowing what is wrong with me is driving me crazy!!!!
lgc5564
06-29-2004, 10:30 AM
I'm from central Ohio also.And when we needed to be seen at OSU and was told it would be months my Doc called and they got me in alot sooner.
Ask your doc it may help.
And GL with what ever you find out.
Bohemut
06-29-2004, 02:56 PM
I don't have MS, but my DH does. He's in the progressive (stage two) stage now. My next door neighbor has MS too. She is still in the remitting/relapsing stage. I've been involved in a couple of studies of caregivers to people with MS. I've also been part of a panel involving information about MS. So I do have some information about the disease.
First off I had my DH read your post. His reply was:
I am not a neurologist.
I know of other tests that you have not described. These are not symptoms that I experienced. I did not experience most of what is described here.
His experience with MS has been much different and mostly has involved loss of sensation rather than pain. My neighbor on the other hand does have lots of pain. She has experienced an "electrical type pain" too. But then so have I--in my case it's because a nerve has been compressed--and I don't have MS. Both my DH and my neighbor have muscle spasms, but not all over their bodies. Mostly my DH has spasms in his legs and occasionally in his abdominal muscles. My neighbor has spasms in her right leg and arm, involving her foot and hand too. She also has had a few minor seizures due to plaques in her brain.
MS is different for everyone who has it. No two people will experience the same things. There are no difinative tests for it either. It's mostly a rule out process. BTW I've checked with several of my sources and once you have plaques caused by MS they DON'T go away. Your body may find a way to respond normally by circumventing the damage, but the damage is still there. My DH suggested you find a different neurologist, possibly one who specializes in MS, since it sounds like the one you have isn't too interested in finding out what's really wrong. I guess my only real advise it not to give up until you find out what is wrong--even if that means changing doctors many times. Good Luck! You can pm me anytime if you want more information. :)
sdmay3
06-29-2004, 03:57 PM
I appreciate your replies. I should have been more specific about the muscle spasms. When i said all over it was because they were occuring in different parts of my body. They specifically were on my left foot, right hand, and upper back. At times the right side of my stomach goes numb. Today it has been in both arms off and on.
Everything started for me after falling down the stairs last year. I have had x-rays, and 3 seperate MRI's of my spine done checking for damage. I had an EMG and something else I can't remember the name of. I have had tons of blood work done and the only thing abrnormal is that my white blood count tends to run high. The hardest part I think is my loss of memory. I walk around in a fog because I have no clue what is going on. I could be in the kitchen getting ready to cook and by the time I walk to the cupboard to get out a pan I have forgot what I am doing. It is really difficult now to understand and comprehend things.
My family Dr. and Neurologist both mentioned a spinal tap but neither has ordered one. I have also heard of an evoked potentials test. Are there any others?
I did call OSU today and told them that I was feeling worse and could not wait until December. Now they are seeing me this Thursday. I am kind of excited to maybe be on the road to getting some answers but also scared of what I may find out.
On a message board answered by Dr.s from the Cleveland Clinic someone had asked about the plaques dissapearing. The Dr. said that the plaques never disappear but they may not be as visible when you are in a remission period. Its not helping that I have orthodontic braces right now so they are unable to get a really clear image.
Bohemut
06-29-2004, 05:10 PM
I am so glad they're getting you in now instead of that long wait! The memory problems do sound like what my DH and neighbor have. I've noticed with my DH that he can remember things that happened the MS hit but doesn't do so well on the day to day things. He forgets things so easily now. My neighbor had a high tech job (I'm not sure what but it involved complicated programing and the such) and she's on disability now because she started to forget the coding. She keeps notes on what she has to do every day otherwise she forgets some things. My DH has me to remind him. :D
The problem with muscle spasms/cramps being helpful in determining a diagnosis is that so many totally different conditions can cause them. For instance I have circulation problems and that causes me to have cramps in my legs and feet. I also have nerve damage in my back, which also causes spasms in my legs and feet. But almost everyone with MS I've talked to (live or on the internet) has complained about muscle spasms.
I honestly hope you DON'T have MS. Better to have something they can treat. Anyway let me know how it goes on Thursday.
sdmay3
07-16-2004, 06:17 AM
I just wanted to let you know that I had my appointment at OSU and it didn't go at all like I expected. OSU is almost 2 hours from here so we went up the night before and stayed at a motel. My appointment was at 8:50 and the Dr. strolled in at 10. My original neurologist sent this neurologist a report stating that major depression was causing all of my symptoms. So he didn't listen to a lot of what i said. The new neurologist looked at my original MRI films and found several other plaques that the first neurologist missed. He wanted me to come back in 3 months with all of my previous films. When I talked to them before the appointment they said my previous films were not necessary. I just can't wait 3 more months.
So now we are going to the Cleveland Clinic the first week of August. They want all of my original films of both my spine and my brain. I have had a total 6 mri's done in the past year.
I had a new neuropsych test done this week. The Dr. that did that test told me that it appeared my brain was working ok, it was just working much much slower than it should. He was able to see the problems with my memory. He was concerned because with MS damage to the temporal lobes will cause memory, concentration, and cognitive problems. Becase of my orthodontic braces they aren't able to see this part of my brain on the mri. It just comes out as a huge black blob.
So hopefully the Cleveland clinic will help me get some answers. This week I have been feeling pretty good physically. I'm just having the memory and balance problems. I bruised up my leg pretty bad because I tripped and ran into a dresser.
Hopefully it will turn out to be something else wrong with me but I am ready to accept an MS diagnosis. I just want to know what is causing all my problems so that I can learn to deal with it.
BOHEMUT: Does the memory problems affect your husband at work?
I used to drive a school bus for Headstart and they are begging me to come back. I am afraid to because I just don't trust my judgement. I don't even think i could plan out the bus route by myself because i can no longer make sense of maps. I am afraid in an emergency I would just forget what to do.
Dawn
Bohemut
07-16-2004, 02:49 PM
BOHEMUT: Does the memory problems affect your husband at work?
I used to drive a school bus for Headstart and they are begging me to come back. I am afraid to because I just don't trust my judgement. I don't even think i could plan out the bus route by myself because i can no longer make sense of maps. I am afraid in an emergency I would just forget what to do.
Yes his memory problems did cause problems with work. He was a systems analysist and couldn't remember code. He is on full disability now (has been for 5 1/2 years). As his MS progresses his memory has been getting even worse. He doesn't want to have a new MRI because he doesn't want positive proof that there are more plaques. He does know that his memory problems are worse though.
You mentioned balance. That is a big thing for my DH too. When I first met him he used a power wheelchair for work and would use a walker or arm crutches at home. He had to stop using them when his balance got too bad. His wheelchair now has laterals (wings) on the seatback to help hold him in place. My neighbor also has balance problems. Not too long ago she lost her balance on the stairs and broke her ankle. She's a lot more careful now.
As for returning to drive the bus, it sounds like it wouldn't be a good idea for you. I say that mostly because you're so unsure about it. Why add that stress to what you're already dealing with? I know stress effects MS and can make it worse. Go with your gut feelings.
I'm sorry about your doctor problems. Getting the diagnosis of MS is difficult--there are just so many tests, etc., that you have to go through. I still hope you don't have MS, but still it would be nice to finally find out exactly what's wrong.
(((((Dawn)))))
sdmay3
07-16-2004, 03:01 PM
Most of my symptoms started last year after I slipped coming down the stairs. I wonder if my slipping was actually a symptom that I did not recognize. When I think past over the past few years I guess i have slowly felt my memory slipping but I just attributed it to being a tired overwhelmed Mom. I know damage to the spine can cause some of these symptoms and the tests so far that i did not hurt my spine when I fell.
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