I haven't posted in awhile, but here's a quick recap. For about 10 weeks, I've been experiencing some weakness in legs/hands (when weak, all weak, not just one), some mild disequilibrium, and muscle twitches (and some more emphatic jerks at night and in morning in bed). I have been tested for MS: brain MRI, cervical spinal MRI, EEG, nerve conduction, and carotid ultrasound all normal. All blood work normal. Spinal tap normal except that my total protein was 53, and it's supposed to be under 46. Myelin protein was 0, IgG and IgM were fine, and no bands. Two neuros have examined me, said I'm fine (both told me to forget about MS) and told me to not worry about the 53 total protein. They both said anxiety and put me on 50 mg of Zoloft. I've been on it a month and do feel better but not all the way better. Last week I saw an infectious diseases/Lyme specialist in Tampa, and he seemed concerned about the elevated total protein in CSF. I don't know if this is negligible (like cholesterol of 201) or if this is bigger (like 2 oligo bands)?
My big question here: Is total protein of 53 in the CSF significant?
My CSF protein was 57 and out of range. My report stated the range as being 15-45 or 50 MG/DL, but I have read that it varies from lab to lab.
Elevated CSF protein is seen in infections, intracranial hemorrhages, multiple sclerosis, Guillain Barré syndrome, malignancies, some endocrine abnormalities, certain medication use, and a variety of inflammatory conditions. That doesn't mean you have any of the above and it probably depends on other test results for confirmation of anything.
Protein concentration is falsely elevated by the presence of RBCs in a traumatic tap situation.
I have the same thing, where when I have weakness, it usually is bilaterally present in my legs and arms, but far more in my legs. I, too, had elevated protein in a run-of-the-mill LP (not an MS protocol LP), and mine was only 48, I think, but still out of range for that hospital's normal of 45.
Anything out of range should raise a flag, and I'm glad to know your doc is looking at it. He should run it again. When I saw my neuro last (my LP was done in the ER, before I ever saw my neuro), I reminded him that I had elevated proetin in my LP. He said, well, you probably had "encephalo..something" (sorry, I can't remember the exact name.) I said, What is that? Hwas a bad headache. I said, I knew I didn't, that it had been done just back in the Spring when I had drop foot (and extreme weakness). Then he stared at me. He looked stumped. He let it pass, as we had lots of other thoings we were discussing, and he wrote some notes.....
So, it seems that perhaps some kinds of headaches can produce elevated levels, perhaps due to inflammation. Guillain Barre would produce REALLY high numbers, I know. They ruled that out with me, due to the low result.
This has probably confused you more than helped, but the good thing is, your doc isn't letting it go. It should be rechecked, at least to see if it is still an issue.
Thanks for the info. Did you ever get diagnosed? The specialist I'm seeing is running more specific blood tests for infection and running a week-long urine-fest while I take three different antibiotics. I don't begin to understand it, but I'll certainly play along in hopes of either finding something or putting my mind at ease. Are you saying that you think I should ask for another spinal tap? I would be willing to do that if it's needed.
I had an MRI of my neck and brain. It showed demyelinating myelin and white spot on my brain, I have had twitches, numbness in feet and right hand and forearm. Fatigue, muscle aches and many other symptoms. I had a LP recently everything was normal except for my protein level of 57. I get really bad headaches, maybe migraines. I went to a neurologist on advisement of my neurosurgeon, I brought a list of symptoms with me, so I did not forget anything. HE told me he thinks that I am trying to find things that are not there. This infuriated me. I am seeking a a specialist in the MS area.Just letting everyone know that you are not the only one.
Not much to a lot of doctors. My IgG is raised, albumin is real high and my index is high. I know they said it was a little high in 99, now it is real high. For twenty years I have been hearing about bad Neurologists and how many have fired theirs 4 or 5 times forums due to the stupid things they say to them that hurt and made them mad. " Who hasn't heard "Have you seen a Pyschiatrist? A Pyschiatrist would be best after a diagnosis. Evidently there is a cluster of the dumbest smart people in the Neurology world in every state. Forums are full of complaints of them.
Can anyone tell me what the conspiracy is for neurologists not to diagnose what is calculable and right in front of their faces and to want to make a very sick person feel embarrassed or crazy and not even listen or care about the truth of what you are trying to say?
I am going on, vowing not to quit, although the big clinic said could not afford them. I should have a diagnosis, counting the 15 years of MRI's, abnormal test results like VEP's, Spinals, (the one for MS) Optic Neuritis (with damage and told it had been there before, and also the white matter damage on my 99 films I do have. Even before they look at all the facts and history, . they all say "I don't think you have an Autoinmmune disease, but you need more tests because you have abnormal high proteins in your spinal." Is this a part of their training?" I was told 4 times I might have MS but still no diagnosis.
I was told for a long time not to worry about all the visual problems, I was told I would not go blind and lame and this by the first MS specialist that did a spinal and VEP and exams with toothpicks, and he did not once tell me I had a white matter disease on my MRI's in 1999 or maybe even before because my records are missing before that and now after the re-occurance of Optic Neuritis in 2006 all the visual damage is uncorrectable.. Also getting lame due to extreme nerve damage from some disease (According to the doctor doing the tests in 06) and even at home I have debilitating joint pain and spasticity causing me a gait abnormality and imbalance/falling spells. Yet they want me to exercise? Yeah I tried it. Just like I was walking a mile or more on my treadmill every morning for months before waking up blind in one eye. Exercise did not stop it.
I am fortunate that I am not totally blind, the large scotoma shaped like a cat eye broke up and I have blurry spots and can't read out of that eye and it messes with my total vision.. It fluctuates. Yet, I keep hanging in there, still seeing Neurologists that say, "I don't think you have an autoimmune disease". I guess God gave them special psychic powers but as far as I have experienced, you have to point things out to them because when you mention them, they have not even seen them.
This Hippa thing is the worst thing to date for patients. One bad doctor and they all just keep reading the same reports down the line. They just read what the last doctor said and "well, that is it" nothing but idiopathic nerve disease in spite of all the abnormal tests and brain demyelination making your limbs weak, May God Bless them .
Oh, if you are a well known entertainer or rich or have Medicare, you seem to get more attention and faster help. . I have to keep trying to remain ambulatory even though it feels like my hip bone will pop out my side.
I just found out I am 7 weeks into having my first grandchild at winters end. I hope that helps this winter's depression. Stuck at home most of the time because you can't drive without fear of hurting someone else when you can't seem to kepp the vehiclet between the lines is very frightening.. They said the demyelination hasn't changed that significantly but my body has. I am going downhill fast and I have not found one doctor that is caring and kind enough to see anything. .
I am a 35 yr old male have had headaches and facial numbness as well as a ticking sensation since November 2009. I have seen GP physician and Nueroliogist, Have had 2 MRI's with contrast both showing 6 tiny areas of bright signal. Headaches are consistant also have had 2 Spinal Taps since March, 2010 and both have come back with negative results for oligoclonal band. The last one which was done last week thursday has come back with high levels of protien in the CFS. Can anyone help me with figuring anything out. I have put all the test results from my last work-up after the spinal tap as well as the ones from the previuos tap as well. I hope someone can Help me figure this out. My Neurologist has told me that the elevated Protien in the CFS done on 6/3/2010 notihing to worry about. Can anyone please Help?
IGG, SERUM 992 768-1632 mg/dL
IGG, CSF 3.6 0.0-6.0 mg/dL
ALBUMIN, SERUM 4530 3500-5200 mg/dL
ALBUMIN, CSF 36 0-35 mg/dL H
ALBUMIN INDEX,CSF 7.9 0.0-9.0 ratio
SYNTHESIS RATE IGG, CSF LESS THAN 0.0 <=8.0- mg/d
IGG INDEX 0.46 0.28-0.66 ratio
IGG/ALBUMIN-CSF 0.10 0.09-0.25 ratio
OLIGOCLONAL BANDS-CSF Negative Negative-
PROTEIN-CSF 54.6 14-45 MG/DL H
FLUID APPEARANCE Clear and colorless
CSF WBC COUNT 1 0-5 /CMM
CSF RBC COUNT 22 0-100 /CMM
BODY FLD MONOCYTES 0-100 %
BODY FLD POLYS 0-0 %
BODY FLD LYMPHOCTES 0-100
BODY FLD OTHER MONONUCLEAR CELLS 0-100
IGG, SERUM 957 768-1632 mg/dL
IGG, CSF 2.8 0.0-6.0 mg/dL
ALBUMIN, SERUM 4800 3500-5200 mg/dL
ALBUMIN, CSF 33 0-35 mg/dL
ALBUMIN INDEX,CSF 6.9 0.0-9.0 ratio
SYNTHESIS RATE IGG, CSF LESS THAN 0.0 <=8.0- mg/d
IGG INDEX 0.43 0.28-0.66 ratio
IGG/ALBUMIN-CSF 0.08 0.09-0.25 ratio L
OLIGOCLONAL BANDS-CSF Negative Negative-
I've encountered some of the same issues with neurologists that others have stated. My advice it to keep pushing for a difinitive answer. I have some tingling in my hands and occasional numbness in my face. I have none of the muscle ache or weakness. Multiple MRIs indicate white matter damge consistent with Alzheimers or MS. My VA neurologist had a LP done is December and my protein levels are elevated. The other tests were all negative for infection or any other influence. The prognosis is MS and she is sending me to the Stanford MS clinic.
Could it be CIDP (Chronic inflammatory demyelinating Polyneuropathy)? I have been dealing with a numb foot since Nov. 2009. My GP did an MRI that was negative so I took it into my owh hands and went to see a neurologist. She did a EMG and NCS (electromyography and nerve conduction study). Both legs showed slower conduction of my nerves - even in the leg that I thought was normal. She said this is probably due to demyelination of my nerves and then she ran a big batch of blood tests and all were negative for diseases that would cause demyelinating of the nerves. So then we did a spinal tap and I also had increased protein at 85mg/dl (normal 15-45). My Igg was 6.1 (normal is < 6.2). But in my blood serum my IgG was 1080 mg/dl (normal 750-1550). She wanted to do a nerve biopsy to look for the demyelinzation evidence but I refused the biopsy - causes permanent damage! Anyway she diagnosed me with CIDP due to the EMG, NCS and elevated protein in my CSF and clinical examination. I am starting the IVIG infusions tomorrow to hope to stop the demyelination of the nerves and stop more damage while I am still in a mild form. I am told I will need IVIG infusions for my life to keep this under check. She also did a MRI of my spine. I have not heard the results of this so I figure that was negative. Anyway, you should bring up CIDP to your neurologist. I know my CIDP was triggered by the seasonal Flu vaccine. I had gotten the flu vaccine in early November and the numb foot started about 10 days after the vaccine. I will NEVER get another vaccine and my 7 year old daughter will NEVER, EVER get any more vaccines either. They are poison and now because of that stupid vaccine I have a debitatiting disease that will be chronic for the rest of my life. I am only 46 and have always been picture perfect healthy. Now I have pain and numbness and anxiety due to this disease and it will NEVER go away.
I am a 42 yo female with chronic back and neck pain, numbness and tingling in my arm and leg on my right side. The pain is always there but never really stays in the same area. Moves around my spine, depends on the day. Could be mid back one day and hip area the next, or maybe kidney area one day. Sometimes feels like getting a bear hug, or a crushing feeling. Mostly just severe pain that nothing takes away.
History--Nov. 1, 2011: Had mild Bells Palsy that produced no lesions on brain. Sight started deteriorating right after episode. Apr. 2012-- First went to Dr. for mass on spine in neck area (C-6,7) that moves, some mild neck pain, and numbness and tingling in my right arm and leg. Nothing showed on MRI, except some mild scoliosis and bulging discs. Neuro said lump was muscle and sent me to Physical Therapy (6 weeks, twice a week). Did not work. Was in more pain and progressively got worse, with pain now in my back. Aug. 2012--Found new Dr. who did a complete blood work up on me to rule out Lyme disease and other diseases, and found that my CRP's (reactive proteins) were high. Did cardiovascular tests, and found all to be normal. Finally did another MRI of brain and neck. MRI showed lesions on my brain and worsening of scoliosis and disc narrowing. Dr suggested possible MS. Still nothing with the lump that is still there. In the meantime Dr sent me to eye specialist who found no Optic Neuritis. Dr. sent me to another Neuro who said possible MS, maybe Fibromyalga (fibromyalgia)?? Ordered Spinal Tap to help diagnose MS. This now 2013 people. Had Spinal Tap, and yes had to get blood patch for headache that lasted too long. Found out today that the proteins in my CSF are high. Dr did not diagnose MS, says I am in too much pain for it to be consistent with MS. Ordered still more MRI's of my spine. No one seems to be concerned with this lump on my spine that is still there and feels as though it is changing, yet when you research high proteins in CSF, one of the first things to pop up is Spinal Tumor??? And I sit here tonight after another Dr appt still not knowing what is causing my pain. Any ideas out there?? HELP!!
Welcome to our community. You certainly have been going through some really tough stuff. There are plenty of terrific people on this forum who are always eager to lend assistance, and I am sure they will.
My suggestion is to repost you question to create a new thread, thereby allowing all the wonderful folks here to help. We look forward to seeing you on here, gaining knowledge, giving encouragement, and going forward in your quest to deal with your challenges.
Hi Bam- This is a pretty old thread. Many of the original posters are no longer around. I'm not sure how to interpret your CSF numbers, burt if you post a new question I'm sure you'll get lots of info :-)
Hi, I was diagnosed with lupus a few years ago, I had tests taken to see if I had the possibility of multiple sclerosis. as I started getting very tired legs and arms,and my legs would give way. I have had a positive CSF oligoclonal bands. they were synthesised intrathecally. they say my CSF index and IgG synthesis was within normal limits, my CSFhas shown a white cell count of 99 and 16 .What does this mean? can you help,
Hi there. Sorry no ones added their thoughts for you yet! You responded to a rather old thread, and sometimes these get overlooked.
If you start this as a brand new thread, it's much more likely to have people drop by to give their impressions (though bear in mind it's a tad quiet around here on the weekend).
Speaking for myself, I never really paid attention to any of the other results from my lumbar puncture other than the oligoclonal bands so I've never discussed any of the results you mention with my doctor.
I will say, however (and forgive me if you already know this!) remember that a lumbar puncture that shows o-bands is not considered a 'positive' result (for the purposes of MS diagnostics) if looked at on its own. It is 'positive' if compared with with the blood (serum) sample that must be collected at the same time.
The CSF must have bands unique to it that do not show up in the serum. And even if this result is considered positive, it's not quite as cut-and-dried as the test being a home-run for an MS diagnosis. It's more like it helps focus the diagnostic lens. It could make a doctor more confident in their diagnosis, for example.
Again, please feel free to start your own thread. There are a lot of people around here who can more than relate to the fun little diagnostic merry-go-round it sounds like you're in the midst of. Welcome to the forum!
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