
Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.

deleted_user
I know most people who see a neurologist for the first time are petrified that it's ms but I'm the opposite. I have been battling symptoms for a few years now and have gone every three months to a Rheumatologist only to hear that all but my ana levels were normal. Now after failing the walk-the-straight-line test and the one where you stand and close your eyes I am being sent to a neurologist.
Below are my symptoms that used to come and go but seem to be here to stay for the past 6 months or so. When they'd come on I would take predisone, per my Rheumatologist, and magically I'd be better. That doesn't work anymore.
Muscle cramping - This is my biggest pet peeve. It's in my arms, back, hands, feet, legs. I'll just be standing to do the dishes and I'll get huge charlie horse cramping in my feet. Same thing with my hands if I do anything for more than a minute or so. I used to think I was just low in potassium so I eat a banana everyday along with one serving of V8 but nothing seems to make a difference. My Rheumy never knew what this was either.
Brain fog - this is now affecting my work. I forget stupid stuff and have gotten written up for it twice now in my annual reviews. I'll look up a spreadsheet (I'm an accountant) and totally forget why I'm there. I figured it was old age setting in (I'm 43) but also I am slurring my words and it takes me twice as long to form a sentence. Typing a sentence doesn't seem to be a problem, just talking it outloud.
Walking - I can't walk a straight line or do that test where I'm standing up with my eyes closed. I bump into things a LOT and I've fallen three times in the past year for no particular reason. It's painful to walk too because my feet are all crampy.
Shaky arms - this isn't all the time but at least a few times a week my hands/arms are shakey. I can't read a magazine without having it be flat on my lap since my arms give out holding it for longer than a couple of minutes. You'd think I was holding a pair of 50lb weights for goodness sakes!
Writing - faggitaboutit. I can't write without my hands being in extreme pain due to the cramping and my quality of penmanship is out the window totally.
My fear is that I go next tuesday to my first neurological appt and I'm told nothing is wrong and that this is ALL in my head. :(
Below are my symptoms that used to come and go but seem to be here to stay for the past 6 months or so. When they'd come on I would take predisone, per my Rheumatologist, and magically I'd be better. That doesn't work anymore.
Muscle cramping - This is my biggest pet peeve. It's in my arms, back, hands, feet, legs. I'll just be standing to do the dishes and I'll get huge charlie horse cramping in my feet. Same thing with my hands if I do anything for more than a minute or so. I used to think I was just low in potassium so I eat a banana everyday along with one serving of V8 but nothing seems to make a difference. My Rheumy never knew what this was either.
Brain fog - this is now affecting my work. I forget stupid stuff and have gotten written up for it twice now in my annual reviews. I'll look up a spreadsheet (I'm an accountant) and totally forget why I'm there. I figured it was old age setting in (I'm 43) but also I am slurring my words and it takes me twice as long to form a sentence. Typing a sentence doesn't seem to be a problem, just talking it outloud.
Walking - I can't walk a straight line or do that test where I'm standing up with my eyes closed. I bump into things a LOT and I've fallen three times in the past year for no particular reason. It's painful to walk too because my feet are all crampy.
Shaky arms - this isn't all the time but at least a few times a week my hands/arms are shakey. I can't read a magazine without having it be flat on my lap since my arms give out holding it for longer than a couple of minutes. You'd think I was holding a pair of 50lb weights for goodness sakes!
Writing - faggitaboutit. I can't write without my hands being in extreme pain due to the cramping and my quality of penmanship is out the window totally.
My fear is that I go next tuesday to my first neurological appt and I'm told nothing is wrong and that this is ALL in my head. :(
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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!!!
Best of luck!!
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
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) )
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
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!
Huggggggssss!
Lorraine