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Old 11-18-2007, 03:09 PM   #1
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MS clinic and criteria for diagnosing MS

Hi everyone-
Well, I just got the news back from my follow up neurology appointment. He told me that he is referring me to an MS clinic in eastern massachusetts and they can do more testing there. Has anyone ever been to one of these clinics? If so, did you find them to be helpful in obtaining a diagnosis if you weren't allready diagnosed?
Has anyone on this board been diagnosed with MS from a spinal tap alone? My MRI's were all normal and I thought the criteria had to be pretty strick to diagnose MS. And in that case, I don't think I'll ever be dianosed since I've been lesion free for over 2 1/2 years. Right now, my neuro said that I had "possible" not even probable MS. I would just like to know for sure. I mean I have every symptom in the book and the symptoms don't go away meaning that I am probably going to fall into the progressive form of MS which is rare for a 23 year old my neuro said anyways.
I'm wondering if the clinic has more explicit testing that a normal MRI can't show in an ordinary hospital. Any thoughts? He also told me that I could go to Mass general or Umass Worcestor. Worcestor is closer for me but I'm not sure which one to choose. I hope they are of equal quality they are both really big hospitals as far as I know. I guess I'll have to just wait and see.
Thanks
Tara

 
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Old 11-18-2007, 04:09 PM   #2
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Re: MS clinic and criteria for diagnosing MS

Hello Tara,
I've heard that Brigham and Women's Hospital in Boston has a good MS clinic. I'm not sure Mass General has one. Maybe another poster will answer with more information. I wish you luck and the best of care.

 
Old 11-18-2007, 04:14 PM   #3
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Re: MS clinic and criteria for diagnosing MS

Thanks, I'll have to check into that sometime soon. I just want to get the best care so I can get a diagnosis and so possible therapy.

 
Old 11-18-2007, 04:33 PM   #4
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Re: MS clinic and criteria for diagnosing MS

Hey Tara. Just wanted to wish you well on this, wherever you go. Theres really no difference between probable or possible MS. In fact, the terms dont really exist. What the doctor is saying to you, no matter how it is said, is that you have enough for him to think its PROBABLY MS, but he isnt either 100% sure of diagnosing it, or something is off, where he wants additional testing done, which he cant do himself. Either way, if you have what you believe are "all the symtoms" and he has enough to send you to an MS Specialist and Clinic, then you definately should go and get your dx.

Now, about the progressive vs. relapsing remitting. Tara, its highly UNlikely that you have progressive MS to begin with. It could happen, but usually happens in men, not women, and usually only happens after the age of 40- you also havent had ANY MS treatments, have you? No steroids, nothing? In that case, nothing is going to go away.
If it makes you feel better- I have had a tingling, burning hand and fingers for over a 19 months now. It led to my dx a year ago. Ive been on Rebif for a year, have done several rounds of steroids for things like optical neuritis, and other symtoms, but the hand is still the same. Guess what? Just because it never went away, doesnt make my MS progressive...it means that the nerve damage was permenent, and wont fix itself...but my MS is still Relapsing/Remitting. And, in the past 8 months, no new symtoms, no relapses, and still on Rebif and loving it! So, try not to worry about your symtoms. Concentrate on finding an MS Clinic which works for you and can see you sooner than later- because the longer your symtoms go on, without any treatment, the higher the possiblity of them being permenent are.
I cant help you with the wheres of where to go, but I can tell you that an MS clinic both deals with diagnosing and ruling out MS- so that is where you need to be.
I do know of people who were dx only by their spinal tap and they didnt show any lesions on any of their MRIs...its very possible.

Hugs to you.
Nikki
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Old 11-18-2007, 04:54 PM   #5
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Re: MS clinic and criteria for diagnosing MS

Thanks Nikki-
I feel a little better now but I am still a little confused. I keep reading things like there are no treatments currently for the progressive type and I thought the relapsing MS had of remission where no symtoms were present at all. At least, thats what I've gathered from my own research. I have always had symtoms and they have just gotten worse not any better. How did you find out that you had a form of the treatable type? The only time I felt remotely better was when I was on a medrol pack (prednisone) trial from my immunologist. It didn't last long though because the side effects were worse! Did you have breaks or "attacks" when you were diagnosed? From what I've gathered is that progressive forms generally show less lesions and thats why diagnosis can be more difficult with this type of MS. Hopefully I will be able to have treatment so I can feel like I'm stalling the process and somewhat in control. Thanks for your advice.
Tara

 
Old 11-18-2007, 06:54 PM   #6
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Re: MS clinic and criteria for diagnosing MS

HI Tara. Let me please explain, there is no treatable type of MS. They dont know what causes it, so they absolutely do not have a cure. What MS Therapy drugs do (copaxone, rebif, avonex, betaseron and tysabri) is they slow down the progression of the disease, by A. limiting new lesions on the MRI and B. by limiting new lesions, you reduce the relapses and C. reduce new symtoms from starting. Its not a fool proof science. There is SO much evidence that this works, but for some people, finding the right med is really tough. I was lucky....Rebif is one of the stronger meds, its also one of the newer ones. My doc felt we should "hit it hard" when I was diagnosed. He didnt give me much time to "wait" and "see" like some docs do. He wanted me on Rebif immediately and within a week of that visit and diagnosis, I was starting it....it wasnt easy. The first few months (3) were really hard. The flu-lke symptoms that they describe were brutal 3 nights a week. Half way thru that time, someone told me to try taking Aleve (which lasts 12 hours) instead of Tylenol and I did, and it was a lifesaver....shortly after that, the symtoms stopped completely from the shot. Meanwhile, my first 4 months on the drug, I had 2 major relapses....both times, Optical Neuritis. I was POSITIVE that the drug wasnt working...and started to get depressed; however at the 6 month mark, I had repeat MRIs...brain and spine, with and without contrast, and guess what? It showed that there was no activity and no new lesions! This was promising...about this time, I stopped having relapses. I learned from Rebif that it takes almost 6 full months to really start working, builiding up in your blood levels (the medicine). I believe it. Its now been over a year, and Im feeling better than ever. Even the shots now, are a piece of cake. Ive traveled the world with syringes, had no problems, work 45 hours a week, take care of my daughter, 2 other stepchildren and my needy husband. I do have bad days...days when my fatigue is really evident, and my foot drops alittle, my fingers and hand have NEVER stopped tingling and burining...some days, worse then others. I have had one minor case of optical neuritis in the past year, but not bad enough for me to want to go on steroids....it cleared up on its own...Ive had some tiny things happen, like MS HUG has struck for a day or two...but really, truly, overall, I feel great!

Lets address what you said: there are no treatments currently for the progressive type and I thought the relapsing MS had of remission where no symtoms were present at all. There are no treatments currently available in the USA for progressive MS, although they are definately starting to prescribe Rebif for progresive MS as well as Tysabri in some cases. Some doctors think that taking these meds might still stop new lesions from occuring. Although not approved for progressive MS, its still done...the medicine itself is approved for MS - so its kind of like, well, it MIGHT or might NOT work, but what the heck? Alot of patients will give it a go, just becasue they have nothing to lose....
As for the concept of relapsing MS having no symptoms while in remission...thats kind of a catch 22 to explain. What relapsing remitting means, is that there are periods where nothing new occurs- the symtoms which you might be experiencing (similar to my hand) could be from permenent damage and they might always exist- however, that doesnt mean that you are getting totally new and different symptoms every day or every month....you might be continuing to experinece the same symptoms as you have always had, but in random order! Thats MS for you...never the same each day..
Tara, I cant say that you DONT have progressive MS. You certainly could..but having been in your shoes, questioning why some of my symptoms have NEVER stopped and I dont feel like Ive ever been in remission, its been explained to me the way Im trying to explain it to you.....some stuff is permenant. It wont go away. Some new drugs are being explored currently to try to find a way to reverse Myelin Damage....hopefully, that will come to be in the near future. My hand needs fixing! But, in the meantime, you dont have to sentence yourself to progressive and ongoing MS at this time.....even if it was, it wont happen overnight. You have plenty of years left to worry about that...even if it is Relapsing/remitting, it can still change over the course of the years. We just DONT know what is going to happen, and that is really scary!
MS teaches us to enjoy our good days, appreicate the ones where we can do things by ourselves, and be independent....it teaches us that we have to take each day as it comes....worrying about the future means stress. And stress means inevitably- a relapse. Who needs either one of those? NOT US!
As hard as it is, I want you to make that appointment, go see a doctor. Get whatever tests have to be done...and try, SO HARD, not to worry about the what ifs....concentrate on the here and now.
Weve got holidays to get thru (stress) family to deal with (stress), crappy weather coming (for most of us, stress). Let whatever will be, be...and in the meantime, look for the answers which you will get when you see the right doctor! Youre making huge progress with what you are doing....baby steps, ok? Youre much further along in the dx then you know!
And, we will all be here for you each step of the way. Keep us posted. And get some rest tongiht!
Nikki
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Old 11-18-2007, 07:43 PM   #7
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Re: MS clinic and criteria for diagnosing MS

Hi Tara,
I know the information you get sometimes must be so confusing sometimes. I was dx with relapse remitting MS about 3 years ago. I have experienced relapses where my symptoms are worse, but then they will get better meaning back to how they were before the attack. However, some of my symptoms are like yours and always there so in this case it will just feel a little better, where other symptoms that I don't experience all of the time will go completely away. Sorry if this confuses you at all, I'm trying to explain my experience as well as I can. Long story short just because you have symptoms that are always there doesn't mean you have Progressive MS.
Definitely go to the MS Clinic, at the very least you get to speak to people that work only with MS and know how to treat symptoms that a regular neuro might not know and they will beable to explain your condition a little better.
Good luck with everything.

 
Old 11-18-2007, 08:22 PM   #8
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Re: MS clinic and criteria for diagnosing MS

Hi Tara,

If you have MS it's a little too soon to know what type of MS you may have. As far as remission - If you had cancer and you were in remission then your cancer is not active.

Unfortunately, for many with MS that is not the case. Remission just means your symptoms are not as bad as when you were in a relapse. In remission some symptoms go away, some symptoms come and go and others are residual symptoms that never go away - welcome to the world of MS.

With Relapsing/Remitting Multiple Sclerosis (RRMS) remission can happen without the use of steroids but that's not the case for everyone. Steroids may or may not help, steroids have long term and short terms side affects and are recommended for acute exacerbations/relapses. The more steroids are used the less effective they can become. However, there are many that do monthly steroid pulses and find them beneficial.

There are drugs used for Primary Progressive Multiple Sclerosis (PPMS). I think most of the treatments for PPMS are the Chemo drugs.

There is no cure for MS. The Disease Modifying Drugs (DMDs) are supposed to slow disease progression and hopefully decrease the amount and duration of exacerbations. Unfortunately that isn't the case for everyone. Some still progress even with the DMDs. There are also symptom management meds that many use.

Tara, you asked about diagnosis based on the spinal tap: My diagnosis was based on a positive spinal tap, neurological exam and symptoms. The MRI was relatively new at the time I was diagnosed.
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5/9/13/ Secondary Progressive WITHOUT Progression

Last edited by Snoopy61; 11-18-2007 at 08:23 PM.

 
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