CSF Protein

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CSF Protein

Postby lynnkay4 » Mon Jul 12, 2004 6:25 pm

Does anyone know what is considered a high level of csf protein from a lumbar puncture.. do all labs use a different scale or do doctors just determine what they consider to be high enough to consider for diagnosis.

I was dx due to symptoms, history, MRI's ,but pretty non specific lesions in the gray matter of my brain... my LP was considered not bad enough for a diagnosis, but they couldn't rule it out either.. no o bands, clear fluid, and the protien was 64 and the labs scale said normal was 15-50..somone else on another site said 45.. but my questions is does anyone know if 64 is considered high enough protein to help with diagnosis.

Have been on Copaxone for 15 months until last week, my doctor decided since my last MRI was better, I should go off of it for awhile and he's holding out hope for Antegren.. but that could be 2005..I've decided I'm not ok with this, and I told him I was... he said your MRI looked good, but you have continual symptoms.. so , lots of people with MS take the ABCR drugs and still have symptoms..I thought my MRI was better because the Copaxone was working..

I'm just confused , and I feel like if I tell him I've changed my mind about being off the Copaxone he will just think I want to be sick. Doctors always seem to have a way of making you feel that way when your just trying to get help.. I'm tired of having double vision for 2 years with no answers as to why. at first my neuro and neuro Ophthalmologist agreed it was from the MS, now their doubting it..I just don't know what to do.

I take seniment for tremors and restless legs, baclofen for spasticity, and zanax.

Any advise would be greatly appreciated.
Thanks
Lynn
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Postby Cathy » Tue Jul 13, 2004 5:50 am

From what I remember from when I worked as a nurse, at least in the US, the protein norm is different from lab to lab. I don't get these neuro's. From what I understand about the ABCR's, you are not supposed to take someone off when the MRI shows improvement. I would tell your Doc that you are not comfortable with this. Ask him to provide literature that recommends this. My spinal tap was also normal. But my brain is full of lesions, which is all they needed to diagnose, along with the abnormal neuro exam and neuro symptoms.

I have become as hard as nails. I do not allow anyone to make me feel like I want to be sick, or that I am just not dealing well with MS, or anthing else. I put up with that for years prior to my diagnosis, and I refuse to deal with that again. It took me 9 neuro's in my first year of diagnosis to find one that I trusted. If your Doc insists on doing something you are not comfortable, change Docs. Good luck to you.
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Postby lynnkay4 » Tue Jul 13, 2004 3:54 pm

Cathy thank you so much for writing back, you are so right about the doctors.. It was hard to start over and over with new Neuro's and then I got the one I have now and he has been great and the only one who was willing to help me, but he seems to be riding the fence so to speak about my dx... one visit it's got to be MS because we've ruled out everything else, but the lesions are pretty non specific..then the next visit, I'm on Copaxone.. it's back and forth lately and I don't know what to think..

I too have gotten where I will stand up to any of them and change doctors, just as I did today. I started with a new neuro ophthalmologist, and I'm so glad I did.. he was very informative ..

I just hate to change neuro's , since I'm afraid I'll go backwards and get another bad one. I guess I'll just have a good talk with the one I have now
and see how he reacts, then decide what to do...

Thanks for beign so understanding.
Lynn
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neuro's

Postby Cathy » Tue Jul 13, 2004 5:51 pm

Do not feel like it is you for the reason you are changing Doc's. Sometimes they just do not understand MS. I used to think this was crazy, but I have come to understand it is not. In Florida, we have a big elderly population, so most of the neuro's are well versed in strokes, and nothing else. Our endocrinologists are well versed in diabetes, but not thyroid disease. Frankly, I do not understand, but I have come to accept this. It is the way it is, and I do not think I can change it. I ahve a physician for every part of my body now. And each individual MD seems to understand their part. For instance, my rheumatologist gets that I have joint and bone pain, but nobody else did. My pulmonologist knows that sometimes MS does affect my breathing, but nobody elce does. So I have actually lowered my expectations of them, but I always get what I need if I go to the right one. I am a registered nurse, and I used to think these Doc's knew everything, but now I understand, how could anyone? So keep searching, and be well. I will keep you in my prayers, as I always do.
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Postby lynnkay4 » Thu Jul 15, 2004 6:23 am

Cathy I know exactly what you mean about having a doctor for each health problem.
I do the same thing.. I have an allergist, gastro, neuro ophthalmologist, and the best primary doctor .. I wish he could treat me for everything.

The doctors are suspecting Myasthenia Gravis also and he is right on top of this, he just sent me for the pulmonary function test and he and my new neuro-opt. want a ct of my thymus gland now..had the blood work done twice.. not showing anything for occular MG, but some new symptoms are pointing to generalized MG...

But then there's those different ole MS symptoms.. My neuro is an MS specialists. He also is suspicious of the MG.. so it goes on , and on.

I think I just need to sit down with him and have a good talk about the MS. He believes I have it, due to the exams, history and the MRI's, but for some reason since I've been on copaxone and I still have had on going symptoms at times, that seemed to bother him.. Well I've read on several MS boards where some people do continue to have exacerbations.
And if that's what I had , the new symptom that stayed is numbness in my back.

Well enough about this dribble, just wanted to tell you I completely agree with this idea of seeking out the right doctor for the right symptoms.

Bless you and hope your feeling well.
Lynn
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Docs

Postby Cathy » Thu Jul 15, 2004 6:40 am

I was on betaseron the first 5-6 months after my diagnosis and I got new symptoms with worsening of my old symptoms every month despite no change in my MRI, which they felt necessary to repeat 5 times the first year. They "blamed" the new and worsening symptoms on me and how I was delaing with ms. I stopped the betaseron on my own, changed Docs and refused to go back on that drug. It took about 6 more months, but I did stabalize after the copaxone. My other Docs who dont know as much about MS as my neuro actually say things like why the copzone doesnt work for an exacerbation instead of solumedrol!!! You know, I have not been feeling well for about 3 maybe 4 weeks now. Some days I am having trouble walking, or urinary symptoms, or slurred speech, and the next day I am fine. I think it is becasue it is so damn hot here in Florida. I don't think I am having an exacerbation. I think that some days I am just going to feel shitty, and some days I am not. Again, I would not go to a Doc with these complaints, because they just do not get it. Now MG can be well conrtolled from what I recall, but you can have MG and MS at the same time. Hang in there Lynn. I gets very frustrating I know. When I go see my other Docs and they ask about MS, I just say I am "fine". I dont even want to discuss it with them. I just saw my cardiolgist a few weeks ago. My 16 year old is in a medical magnet high school program and I told him she was thinking of becoming a neurologist. This man who I have known and respected for 25 years told me not to let her become a neurologist, because their is nothing you can do for neurological disease. Sad. Like I said, hang in there. Hope you feel better.
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