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Old 02-21-2010, 06:28 PM   #1
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Please Help Need opinions/advice

I just turned 23 and I have issues that seemed to just keep coming up and getting worse. My doctor mentioned MS so Im seeking advice. I will try not to make this too long. Over the past year I have had problems with dizzy spells and the doctor I was seeing blamed it on vertigo. I also had the occasional tremmor in my hands but that was just tossed aside. Over the past few months those two symptoms got worse. The tremor seemed to happen all of the time and affects my job because my hands were so unsteady. The dizzy spells would just come at random times. They would only last seconds to minutes but there are also times where I just feel really unstable. There are also times where I feel like Im off balance. Ive also noticed my memory has gotten really bad. Someone can be talking to me and I will understand everything they say but proably wouldnt be able to repeat even most of it. I would just remember bits and pieces. Some things just never cross my mind and it takes something to spark my memory. Someone can show me how to do a simple task and I will feel like I understand but as soon as I try to do it I cant do it. I also have times where I cant see well. It seems like I am squinting more. It seems like when it happens it will be a problem with one eye but the weird thing is the blurry vision will switch eyes. My new doctor also noticed I had nystagmus in my eyes when I follow his finger. Ive also delveloped a new constricting feeling in my forearm. It just feels weird like a band is around my arm or its slightly not there. I have also felt that sensation in my legs. The other problem I have had is tingling in my hand and legs. It doesnt matter what I do I cant get normal sensation to come back. It will last for a while and then when the tingling goes away my arm or leg will hurt for a while. I also have bladder frequecy and have suddenly developed bowel issues (sorry TMI) . I also will get really tired randomly. I even fell asleep driving last month because it was so bad. It just hit so sudden.Sorry I know this is alot of info and I feel like I forgot some but Im just nervous. For some reason my doctor wanted to wait a month for me to come back and possibly be reffered to a neuro or get a MRI. Does this sound like MS? Sometimes the tremors get worse with exercise and it feels like the tremors will move in my legs or neck and head if thats the area Im trying to lift off the mat. Im just nervous. I hate not knowing. Please let me know what you think. If I just knew what this was I feel like I would be able to handle it better.

 
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Old 02-21-2010, 06:34 PM   #2
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Re: Please Help Need opinions/advice

Hi there. You have allot of symtoms! No wonder you are nervous! Dont be....we are a friendly bunch!

It does sound like many of your symtoms are neurological in nature; however knowing if this is MS related is hard to figure from descriptions. MS is very hard to diagnose- and the only way it can be done is to rule out everything else...alot of tests are in your future. The first one is the MRI. Make sure when you get it that they do both your brain and Cspine and with and without contrast....contrast is the dye they inject into your arm. By doing it this way, it will pick up any lesions which might be too small to pick up otherwise.

You really should pressure your GP to see a Neurologist...dont bother having your GP send you for the MRI, as he isnt speciliazed enough to know what to do with it...see a Neuro and specifically try to see one who specializes in MS. You can call the MS society for referrals or get one from your GP- but try to get the testing done sooner rather then later...what you are going thru doesnt sound like fun- and the appointments with MS specialists can take 4-6 months!

I know this doesnt help allot- but I hope knowing you have somewhere to turn to, helps some....welcome to the board and Im sorry you are going thru all this.
Nikki
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Old 02-21-2010, 06:49 PM   #3
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Re: Please Help Need opinions/advice

It does help alot. Just to be able to talk to someone helps ease my mind. I will call the MS society tomorrow. I was seeing a different doctor who sent me to a neuro who is her friend and he was crazy. He seperated every symptom and told me it was things like stress and premature aging of something in my brain even though he didnt look at CTs I brought and he didnt do anything except check my reflexes and told me I had migranes with no headache. He was crazy. I just want to know whats wrong because I dont feel like Im able to function right. I also meant to ask if headaches are a symptom of MS. Sometimes I will just get sudden sharp pains at different places in my head. Are they able to see lesions on a CT scan? I had to have one in oct for the nystagmus and they wernt able to do a MRI at the time because I had a medical implant. Since then Ive had it removed so I can have a MRI now. They didnt find a reason for the nystagmus on the CT and just left it at that. The doctor Im seeing said he is afraid it is ms but that the CT didnt show any signs of it. Things have definatly gotten worse sense then. Its just so frustrating because Im trying to go back to school but I have such a hard time remembering simple things and it makes it seem like I dont care or pay attention but its just that I honestly cant remember things.

 
Old 02-22-2010, 04:52 AM   #4
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Re: Please Help Need opinions/advice

hi again. No, they cant see lesions on a CT scan and yes the only way youll ever find out is with a MRI...and thats just the beginning. Lesions, can be caused by any number of things, one of which is Migranes. So, if you are already having migranes youre going to need a very good Neuro, one who knows MS- in order to either dx or rule out MS.

The brain thing he was talking about is probably the word Atrophy? Its not unusual to have a doctor say there is more atrophy due to aging on a scan...was that it? If he said that you have higher then normal Atrophy for your age, it doesnt necessarily mean MS...

And no, headaches are not a normal part of MS although they certainly can accompany the disease. Stress CAN bring on headaches and having MS- and also NOT knowing what is wrong with you is certainly stressful- but its not an indicator of the disease.

You should read up on the McDonald Criteria to learn more about how MS is dx..

I hope you find the right doctor and get some answers soon!
Nikki
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Old 02-22-2010, 06:02 AM   #5
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Re: Please Help Need opinions/advice

Thanks again! That neuro was crazy. He tried to say the dizzy spells were due to migranes without headaches but I have absoutly no other symptoms of migranes. He said the tremors were due to some part of premature aging of some small part in my brain but I dont believe him because he never looked at a single scan I brought or ordered test. He just said that from the physical exam. I just hope I can find a Ms specalist near me.

 
Old 02-22-2010, 12:23 PM   #6
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Re: Please Help Need opinions/advice

If you cant find a MS specialist near you, call around to different Neuro's and ask if they have a large MS practice. Not all Neuros see MS patients, doesnt sound like the one you saw has much experience with MS....however, quite a few regular Neuros have a big MS practice, and if you can find one of them, youll find someone with more experience.

I was seeing both a regualr Neuro and a MS specialist- the Neuro was in network costing me 15$ per visit, the MS specialist didnt take any insurance and cost me 450$ per visit....after 3 years of this, I started realizing that the MS specialist wasnt doing a thing that the regular Neuro wasnt already doing- and my Neuro has a stable of MS patients which make up the better part of his practice! I also like him better....so, its not actually necessary that the doc has a specialty in MS, as long as he is ultra familiar with the disease.

Call the MS society and ask for referrals, or shout out here with what city you are near and ask if anyone has any referrals for you! Start a new thread if you go that route...youll get more responses!

Luck to you...
NIkki
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Old 02-22-2010, 07:30 PM   #7
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Re: Please Help Need opinions/advice

I drive an hour and a half north to Kansas City to see my neuro every 6 months. It is worth it because the neuros around here do not have a grasp on MSers.
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