I have had mild MS symptoms that have come and gone for the last 10 years like numbness, odd sensations, blurry vision, weakness etc, but recently had a really bad attack and suffer from constant fatigue. I saw many docs who did all types of blood tests and they cant find out what's wrong. They all said it's likely neurological, a few even said it could be MS or eye problem that could also mean MS, so I got a neuro appointment.
My neuro today practically laughed at me when I asked if it's possible I have MS. She said my symptoms are likely related to stress at my job, since the 'attack's I get usually are triggered by stress. She then said there is no way I have it since the disease is very rare and because there are zero lesions on 2 MRI's I have had (one last year when I had the bad attack, and one in 2003 when I had another similar bad attack). I asked to get another MRI and she said it wont be necessary since I just had one done last year. Then she said she wanted me to get some blood work to test for stuff I had just been tested for (thyroid, ferritin, mono-all came back normal) and an LP! She then
spent a good 10 minutes describing the LP procedure, which sounded extremely disturbing. I asked why she
wanted it done and she said she wants to check the CSF levels but she said she's almost certain that everything will come back normal and that I should be prepared to have "no answers" from her ...
I've been reading more about the LP and scared to death about it. It seems REALLY painful, I cannot do that. I'm the kind of person that gets so worked up/scared and sick to my stomach about a simple blood test so imagine how I'm feeling about this huge needle going in my back! I actually feel like vomiting just thinking about it. I'm thinking of calling to cancel the appointment, but I keep flip flopping back and forth and need to make a decision fast. The appt is Saturday AM.
I guess my question to all of you is why would the neuro make me do this test if she thinks I have no way of having MS? I read online about reasons for the LP and the only other reason it seems is to test for meningitis, but I have had the vaccine for that. Should I go to another neuro who can order other tests, aside from LP, or a more accurate MRI since my MRIs were all quick 5 minute scans?
Hi, unfortunately, like so many people, you sound like you've been through the ringer trying to get to the bottom of your health problem. Your neuro would like you to get a LP in order to further rule out MS - no lesions, and no O bands is not definitive but much more likely that you don't have MS. If the test is positive then it could just take you one step closer to a diagnosis.
I won't sugar coat my LP experience - it sucked! But from what I have read most people don't seem to have any problems. For me, I was numb/tingly with hyperthesia so when they put the anesthetic needle in I jumped and yelled a bit. Then after the second lot of anesthetic injection and I was 'numb' the LP started. I felt a weird tingling up and down my spine. Then afterwards I had a bit of a headache and felt very weak.
Overall, I would do it again to get that one step closer to a dx.
No the LP result doesn't not in itself determine you have MS. My neuro combined the results of positive Oligoclonal bands in CSF and negative in blood, with lesions and other neurological symptoms to conclude that it is highly likely that I have MS. We won't know until I have a second attack. Results of clinical studies on O bands suggests that it is predictive of MS anywhere from 97% to 80+%.
I wish to know if my MRI was sufficient to diagnose for MS lesions... Technique, Multiplanar multisequence MR imaging of brain performed including axial diffusion-weighted imaging. Post contrast triplaner T-1 weighted images also obtained using 11 cc's of intrav. Mahnevist.
Is the weighting high enough? I've read that they should be minimal 1.5 up to a 3, for MS diagnosing.... how do I know if they used MS protocol?
do all MS patients have a gait problem? I realize it can start small and progress... all the way to wheelchair assit.... But, initially, when diagnosed w/ MS, must you have an unusual gait mandetory in dianosing?
Sorry, we are hijacking G23ek thread. I would suggest posting your question in your thread. Your question is over my head but there are many other threads on MRI in archive pages found in top right hand corner.
I'll try to answer your questions. First, if you have a competent doctor, an LP doesn't hurt, or hurts only minimally. They use local anesthesia, so mine just felt like pressure on my back, nothing more. Some people with unusual back conditions can have pain, but nothing in your post suggests that.
The common problem with LPs is a killer headache, which usually starts within a day or two. However, even that is not so common, only one in seven get it at all. I didn't. I got up, went home, and resumed my life. For those with anxiety about such procedures, a med such as xanax taken just before will relax you greatly.
Your neuro sounds awful. She spent all that time describing the procedure to scare you, I think, because she wants to dissuade you from having it. An LP can provide valuable information, though in itself it is not diagnostic of MS, nor does a normal LP rule MS out.
So here's what I suggest. Find a new neuro as soon as possible, preferably one who specializes in MS (which by the way, is NOT rare. It is estimated that 400,000 Americans have it.). Make sure he or she gives you a very thorough neuro exam--beware of those who don't. A good neuro exam takes at least 30 minutes. Bring copies of all your blood tests and any other test results you have, so these don't have to be repeated.
You don't say what kind of MRI you've had, but I assume it was brain. However, no MRI that takes 5 minutes can tell much about MS. You need the MS protocol for MRI, which will take a good twenty minutes to administer, because it looks at very small sections at a time.
So a good neuro will order a 'real' brain MRI, and also other tests such as evoked potentials. An LP usually comes later, though some neuros are skipping these altogether when MS is suspected.
Since you have had vision issues, I urge you to see an ophthalmologist, or ideally a neuro-ophthalmologist. You don't have to be having current problems to do this, though I guess it's better if you are.
I understand about having mild symptoms over the years and not doing anything about them, or just being glad when they're gone, but now you really need to look into things seriously and find out what's wrong. There are many MS mimics out there, so this isn't a short process. But it's a much better one when you have a doctor who knows what he is doing and who doesn't automatically assume you are 'just stressed.' Everybody's stressed, for heaven's sake.
I hope you don't have MS but I also hope you do find out what's wrong. Good luck to you in this. Stick around here meanwhile, and do read our Health Pages.
tingletingle, Tish470, essdipity, kerrtelli, HVAC, Lulu54
Hi all-I just wanted to say that I have NEVER seen an online community/forum that has as many helpful & kind people like this one. To each of you who responded, thank you so much for the gooooood advice.
If you are taking a vote, I vote to get the LP done this saturday. A lot of people on this board have to beg their dr's for tests to get answers. If you have a dr willing to perform this test and it could give you some answers, I say do it.
I disagree that your problem is stress but like a lot of us MS'er's our attacks can be tied to high levels of stress.
Get the test done. Ask for some drugs to calm yourself and have some faith in the process. Good luck!
To answer your question as to why a neuro would order an LP when they say you don't have MS, the answer is: they believe they are doing it for the patient's peace of mind, so the patient will stop thinking about MS.
Somehow I had had the insane idea that my neuro ordered an LP to help figure out what is and isn't wrong with me. But in an e-mail to me after the failed procedure (I have scoliosis, curvature of the spine, and they weren't able to withdraw any spinal fluid), he said it was too bad because a negative result would have helped "allay my fears."
So you see? Their agenda is to "allay our fears." Not to take further steps on the path to finding out what's wrong. :(
A very jaded Nancy T. (who, however, does not believe she has MS)
I had a spine and brain MRI (this took over an hour.) The neuro ordered an evok potential, blood tests, and then ordered the LP. If the doctor is experienced it is not painful - the numbing shot pinches a bit. They make you lie down for about an hour after the LP though. A headache can result from this but I did not experience that.
I would recommend that you get a doctor you feel you can communicate with and feel comfortable with. Getting the test done would give you more information and you can ask for a copy of the results for your records.
I agree with the others regarding the testing. No one test can diagnose MS. In the LP they are looking for certain proteins (O-bands). I am not sure if they use this test to help rule out other diseases that mimic MS.
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