So you haven't had any MRI's yet? Or a spinal tap? My hubby and I both have MS, he had MRI's, and a spinal tap. I had MRI's, refused a spinal tap, so our MS specialist ordered $2,500 of lab work on me to rule out the other 80 or so auto-immune diseases. Those all came back negative, so she then knew it was MS...plus I had the lesions consistent with MS, and they also went off my two attacks and the time between them. I know what you mean though....when hubby started dragging his one leg, and had major vision issues in his one eye....I breathed a sigh of relief when the Neuro said he had MS, and at that time I had only "heard" of MS, but it just didn't sound fatal to me, and come to find out it very, very rarely is. While I know that MS is not pleasant....I do know that there are worse diseases out there. I wish you the best...keep us posted =)

hon, it sounds like ms to me. I have all your symptoms and more. Insist on a mri-and lp--ms is a very strange disease, with lots of crazy symptoms. Hang around here a lot. You will have lots of questions, you will need support-we've all been through it --we're here for you!

when you go to dr ask him for provigil--works pretty good for the brain fog and fatique..be tuff, be strong!

I had an MRI about 7 years ago and they didn't find anything. I had one because I had a huge migraine (optical at first) but nothing was there. After that they thought it was Lupus so they sent me to a Rheumatologist who ran some tests and said that my ana level although not normal was not too bad and that my main problem was obesity and if I'd just lose the weight I'd be fine. That was the Chief of the Rheumatology Dept at MGH so he *can't* be wrong, right? After that I spent months feeling sorry for myself because try as I may to exercise to lose the weight my feet and legs just hurt too much and that coupled with the fatigue that I had/and have it just didn't work. I found another Rheumy who treated me and not the tests. When I said I was in pain he believed me and said "of course you can't exercise when you're in pain!". I have been with him ever since but it's getting old since I'm getting worse and he can't do anything about it.

It's only since I started complaining about bumping into things and falling down that it dawned on him (not my primary care who i've complained all along about this stuff to) that this may be neurological.

I know MS is no day in the park. My sister in law is in a wheelchair and my brother needs to feed her, take her to the bathroom, etc. I just want to have a name to what I have instead of thinking this is all in my head and that I'm just lazy you know? A different, curable diagnosis would be lovely but I don't know any that encompass all of the symptoms that I have. Guess I have to wait until next week to find out what the neurologist says. Thanks for letting me vent!!!

Not knowing is worse than any diagnosis. I hope you get some answers. You never know, maybe the neurologist will come up with something different, something easy to fix!

Best of luck!!

I'm right there with you. alot of the same symptoms, i have brain lesions, no spinal lesions, negative l.p. and abnormal evoked potential exam. my doc said, not m.s., is m.s. back to not m.s. i'm seeing a different neurologist tomorrow. it was on this site that i found out peoples diagnosis are come to in many different ways, some all tests are positive, some half and half, some less...i wish you the best. my 1st doc said wait and watch, i'm like you, i want a name to what is up with my body!

Hi bostonlass!

Im sorry you are having to go through all of this but you did find DS and that is a great start! Ask the neurologist to order the MRI of the brain with and without contrast using MS protocol. Seven years ago many hospitals did not have MS protocol so the MRI result would not have shown them what they need to see for MS. If there are active lesions or scarring from previous lesions in the white matter (inside lining of the ventricles of your brain) the MS protocol will make it easier for a more definitive diagnosis of MS. The spinal fluid analysis could give the neurologist a "suspicion of MS" but is not a way to definitively diagnose MS. There is no definitive test or procedure for diagnosing MS but the spinal fluid result and extensive lab test results along with the MRI will allow the neurologist to eliminate many other disorders and arrive at the it cant be anything other than MS decision. This is why they call it "the art of medicine."There are few things that are clear cut for diagnosis especially not MS. It is a process of elimination along with the knowledge and experience of the practitioner that will get you some real answers. If MS is the diagnosis they will want to start treatment as soon as possible. All of the FDA approved treatments are injections, so be prepared for that suggestion with a diagnosis of MS.

As far as I know, obesity is rarely the causative factor in a neurological issue, if ever. It can definitely contribute to the frequency of exacerbations and at times make things worse over all. But that would be related to the quality, (what you are eating), more than the quantity, (amount you eat). It is possible to lose weight without exercising by simply decreasing the quality and number of calories you take in to being less than what your body uses on a daily basis. The exercise is helpful but not the main component in weight loss. Blaming obesity was a BS diagnostic ploy by someone that didn't want to deal with something that was "hard" to figure out and was apparently taking too much of their precious time. I am a nurse and I, by no means, have all the answers but I do know medical BS when I hear or see it!

Don't let them sell you a bill of goods or put you off any longer. If they tell you it is "NOT" something ask them exactly why they think that it is not. If they say it "IS" something, ask them exactly why they think it is that particular thing. You and your insurance company are paying for their services. Would you pay for your food at a restaurant and then accept an empty plate? I bet you wouldnt, so dont allow the medical professionals to leave you with a costly empty plate either!

Hang in there and stand your ground! There is nobody more concerned with your best interest, your health and your day to day quality of life than YOU. Dont let them try to make you believe that they are more concerned because they are not the ones falling down or arbitrarily losing track of events. Please come back to DS whenever you need help with any of this sort of thing. There are many people here that have dealt with all this stuff for much longer than either one of us. They are happy to listen and help whenever possible!

Rebecca

My biggest issue is constant dizziness! Forget closing my eyes and doing anything but stumbling and falling. Walk a straight line? I couldn't stay on a 1 foot patch with a BAC of 0.0 ...

Get an MRI and blood-work done. If those are both negative, have the spinal tap done, if THAT is negative too ... well I'm sorry - start over because you most likely DON'T have MS.

I know that sometimes the uncertainty is the worst part of it! Best of luck! (It would be too weird to say - I hope they tell you that you have MS ... :S) )

Lots of very good advise if doc will do MRI ask him to do brain, brain stem and spinal colum as sunnybrook said with and without contrast. Also Have it done in a closed MRI Machine much beter deffinition than open machine. research your nuero does he treat a lot of MS patient or are they part of a ms clinic?
Write down all your questions you want to ask and as others have said dont take I don't know as a answer or a wait and see as a answer .
If you are not getting information you need to look for a doc that is going to give you help. Sorry to say it thier are a lot of docs who aren't very good. some one had to graduate last in thier class.

Good luck and where here to support each other. Keep your head up

Wow this place is so supportive! Rebecca you are very empowering!!! I'm seeing a neurologist, again at Mass Gen'l, who specializes in slurring words, forgetfullness and headaches. I guess their neuro dept is very specialized and although I have more symptoms than that this is where they're starting me off. I will definitely bring up the MRI if the doc doesn't bring it up.

If I do indeed get the diagnosis I was thinking of going to an MS clinic run by Brigham and Women's. It's been recommended to me and has a good rep so might as well go there once the diagnosis is had.

Does anyone else have IBS? It's severe when I have a flare up of whatever the heck it is I have and totally annoying! I can handle holding on to the sides of the walls whilst walking, I can handle not knowing what I had for lunch and I can even handle that *look* my boss gives me that says "you are a complete and utter moron" when I forget to do something she remembers (though honestly I think she remembers EVERYTHING...it's freakish I tell ya!!!), but what I cannot deal with is not going out with my husband when my kids are with the ex because other than wearing depends I'd have a huge accident on our hands. :*(

Anyways I'm glad I found this site and I'll now fall back and read read read until my appt which has been postponed until Wed. morning. Thanks!

I totally understand what you are saying and am right there with you. It isn't that we want to have MS it is that we want a definitive dx and we believe we know what's going on in our own body BETTER than the doctors do! after all we have been in them for years and the doctors we see have seen them from the outside for minutes and bodies don't read books darn it! we may not all be text book cases but if it walks like a duck, quacks like a duck...................

Huggggggssss!

Lorraine