Hi, I am new to this site and am sooooo confused about ms and the diagnosis of it. I have had 2 different mris that say I have ms lesions and one neuro who says that it is ms, a neurosurgeon who told me the other day that it is his belief that the pattern of the lesions can only be from ms. then I had a group of doctors from phila. 2 years ago say that they weren't convinced because I did not have balance problems. My problems are mostly neuro. fasculations in both legs constantly, new nightly muscle spasms in the legs, 6 or 7 a night. they are better now from the zenaflex thank God!!!!!!! constant burning, pins and neddles in both legs. also hyper reflexs in arms and legs. Now when I went to Phila. I only had occasional faculations and not much else going on but since then the problems have progressed and are constant. It was suggested that I have a spinal tap but I was chicken. Due to neck problems I was advised I need a myelogram so I asked if a spinal tap can be done at the same time and they said it could be done. I am scared to death. should I do it?
An LP is NOT necessary for a diagnosis of MS. If it's positive, that's more evidence of MS, but if it's negative, that doesn't mean much. So from that perspective you don't have to have an LP.
However, a great many of us here, including me, have had one, and we've all survived just fine. If you have one, you will too. You could possibly have a killer headache later, but you could very well have no effects whatever. I didn't, and I'm no special case.
In general an LP is not painful, or not much. Having this test might help you get a diagnosis faster, so if getting to the bottom of what's going on is important, this is something you'd just have to do and get it over with.
By the way, any neuro who says you need balance symptoms to have MS is a neuro who should be history.
I was told that the LP was a final indicator in the diagnostic process -- which is why I had it done.
The tap itself was not painful at all. In fact, I joked about how easy it was.
The headache the next day was a different story -- but if you can lie flat and drink LOTS of water (and then more) you will be fine.
I had my LP done on April 28 and, as of today, I just have a minor headache - so it's getting better and better each day.
Ess is exactly right. You do NOT need an LP. What you do need is a neuro who understands the diagnostic criteria of MS and that MS is a clinical diagnosis. If you've got a neuro who says it's MS, then there's no need for an LP. The criteria provide ways to dx this without doing the tap, and the tap just adds to evidence--it does not rule MS in OR out.
I've had three spinal taps in the past year. They did not hurt. My recovery was fine. I did the caffeine/back thing each time, but the third time, the neuro I was with told me that the caffeine, etc., was all "voodoo" and not to worry about it. I pretty much took that advice and...everything was still just fine. He said that some people--a relatively small percentage, like 15%--just get the headache and most don't, and that's all there is to it.
thank you all so much for your input. I think that I am only going to have the mylegram done because they told me that hyperreflexes can be caused by only 2 things. the ms. or spinal cord compression. having had a previous neck surgery the doctor wants to see what is going on behind the plate in my neck and he said the only way to tell is to get the myelogram. I am a nervous wreck about it because the one I had 20 years ago was very painful during and after the procedure. I did get the spinal headache. I have been doing alot of research on the myelograms and it sounds to me that if it is done right there should be no headache. That only occurs if they make the spinal fluid leak. I pray that as with the new emgs (which today don't hurt like they did 20 years ago) perhaps the myelogram too won't be as painful.
Adding on a belated welcome and wanting to ask you a question....
Did the neuro who said you had MS recommend disease modifying drugs? Or, did he/she say to get a 2nd opinion and that is why you moved along to the other Drs who are not convinced it's MS? What testing did the 1st doc do and did you like him. (gosh, I'm sorry that was like 3 questions...ha/ha)
It's understandable to be fearful of the LP. It's really not unbearable. And, you've got us all now to lean on! We can talk about that LP later if you decide to get it lined up.
I had a spinal tap done. The procedure is not painful but the massive headache I had for the week after was ruff. I heard that drinking a lot of water helped. I think part of my problem was I was in the hospital when I had it done and they were taking all sorts of blood work on me to figure out what was going on with me. I think I was dehydrated, plus my one and a half year old daughter had the stomach flu and gave it to me. So on top of throwing up I had a wonderful spinal headache. When I laid totally flat it did not hurt.
hi, Thank you for your welcome! I originally went to my family doctor. At the time I was having twitching in my legs. They were also achey (achy). After talking with me he ordered the brain mri (which showed brain lesions) and a lumbar mri. He called the next day and told me I had ms. He made an appointment with a neuro guy. I went to him and he said he was not convinced that it was ms. So I went back to my family guy and he said go to Phila. So I went. They talked with me and concluded that they to did not really think it was ms but suggested that I should get a spinal tap. That was almost 2 years ago. I did not get the spinal tap. I have had back surgery in the past which included a myelogram which did not go welll so I did not want any more spinal needles. Anyway in the past 2 years things have gotten progessively worse. I went to a different neuro 3 weeks ago and he was shocked when I told him they didn't think I had ms. I also had an appointment last week with a neuro surgeon for a neck problem ( I had surgery there to) and he looked at the brain mri and he said " I do not care what they told you but it is my professional opinon that you have ms. I need a myelogram for my neck so I asked can you do a spinal tap at the same time and they called the radiologist and he said yes. I just have to find the courage to go through them.(sorry this is so long but I wanted to answer your questions) Thanks. In the meantime I am having excruciating muscle spasms in my legs at night. I was taking Hylands leg cramp pills and they stoppped working. The new neuro guy gave me 4mg.zanaflex they worked for about 10 days. However now I take the pill at 10 at night and by 3 I am in extreme leg spasms again. Does anyone have a suggestion on what could help? I can't take this anymore.
I am going to call the radiologist first so I can find out about combining the 2 tests, yes I know it can be done but I want details. I do not want to sit there with them digging in my spine for 2 hrs. After I talk to them I am going to call the new neuro guy to let him know about the myelogram and also about the spinal because he is the one who has to order the testing on the fluid. I am them going to ask him about the zanaflex. He did mention Balcofen when we has our first consult along with the zanaflex but when I called they ordered the zanaflex. There was a ? I wanted to ask, about a week ago I woke up in the middle of the night and the left side of my face felt like it was on fire! It. I was putting cold rags on it most of the day. It lasted until 6pm. it happened again to the left side of my back the other morning but this time it only lasted about a half an hour. Is this from ms?
Hi, while looking into the details, make sure that they can arrange to do a blood patch if you do indeed get a spinal headache.
I had one three days after my LP due to a nasty spinal headache (took a lot of persistance on my part to arrange it), and it relieved the pain right away.
The LP itself doesn't have to be painful, and I would think that a neurosurgeon would have an excellent touch at doing such things. If an interventional radiologist is doing the procedure, ask your neurosurgeon if he's allow that doc to work on HIM.
I'm not sure about a myleogram, never having experienced one. Is it possible for them to lightly sedate you during the procedures? That would reduce your anxiety, relax your body, making it easier for them to work, and make it less likely that you would feel discomfort.
I'm not sure about your burning face; but there are all sorts of weird parathesias that happen with MS. I'm not diagnosed, but I have a painful and sometimes burning parasthesia in my right forearm.
I find that I get burning on my face like that if I've taken or been injected with steroids; I've tried a few epidural steroid injections for back pain, and they cause really hot flushing on my face. Two of them actually made my pain flare worse, so I decided not to try any more! :o)
I found zanaflex very helpful, but developed an adverse reaction to it. My PCP switched me to valium, of all things, to take at bedtime. With all the good luck people on the forum have had with Baclofen, I'm wondering if it would be a good choice for me.
In the meantime, could you split your dose of zanaflex? I don't know if 2 mg. would be enough help, but if so, you could take 2mg. at 10 pm, then 2 mg. at 3 am. Ask your doc; maybe a different dosing schedule, a switch to Baclofen, or a combination of some sort might help you get through the night.
thanks for the suggestion I just called and left a mesage with my new neuro guy about the zanaflex. I also just posted a rant about misinformation that was given to me about combining the 2 tests. When I called the imaging center they told me that things have changed over the 20 years since I had my nightmare first myelogram. I hope that she is right because I know that I have to get the test. I will probably go next Fri. that is when they have an opening. This way at least hopefully we will know once and for all if there is a problem in my neck again!!!!
hi akeina, I would like you to know that I had my lp and it was not that bad. Although I would rather not, if they told me that I had to do it again I would. I was lucky and did not get the dreaded headache that you could develop. My advice,do not get out of bed at all the day you have it done. Only go to the bathroom and when you do bend forward at the waist and keep your head down and stay in bed laying totally flat until the next day. When you get up in the morning raise your head and if it hurts get back in bed and continue to lay flat. try to raise your head again that evening and if it continues to hurt call the doctor. good luck to you. let me know how you do.... roncart
hi everyone... i have a long story but i really need some advice. i am 28 yrs old. 8 years ago i started to lose grip in my right hand and occasionally it was painful, 4 yrs ago i started to have horrible headaches and neck aches and pass out and this comes and goes but i get dizzy everyday and feel like i am going to pass out. about 9 months ago my vision suddenly and i mean suddenly went very blurry. went to eye dr and he said he wasnt sure why i couldnt see and prescribed me glasses, my eyes now hurt behind them sooo bad and there is lots of pressure and it hurts to move my eyes up or down left or right, my bladder hurts quite often and i only drink water, there is a spot on the top of my head that feels like a bug is crawling around or a vibrating feeling that has been happening for a couple of years and recently it started to do it between my shoulder blades. i have to be very careful how i move my head because one wrong move shoots a shap pain down my neck and back that takes my breath away, my grip in my hand is now so bad i cant write and i drop things constantly and for a few months my right foot and leg feel the same week feeling and sometimes i feel like im walking funny and i limp a little. i have really bad pain in my hips and when i take a shower i end up in pain sometimes i cant get out of the shower and my husband has to help me because i cant lift my leg over the tub edge. sometimes when i am talking i forget what im talking about and even if someone reminds me i cant finish the story b/c its like i dont know the rest of it. i feel very confused a lot of the time. i sat a green light the other day and stared at it thinking is this light ever going to turn green? finally my husband looked at me and said the light is green! i got so upset bc i was staring at the green light waiting for it to turn green, this kind of stuff happens a lot to me. i went to the emergency room the other night bc of the pain and i passed out, they gave me a cat scan and said it was normal and ekg was normal, they gave me morphine through i.v and i asked them about 30 minutes later if i could have pain meds and they gave me more morphine (sorry dont know how to spell that) and it didnt do anything for the pain so they gave me something else and it didnt work either so they sent me home with percocet and ibuprophren which is doing nothing but jacking my brain up and i still hurt. i told the dr my ears were hurting also like an ear infection type pain and they ring a lot and sound is sometimes muffled and he checked my ears and said they looked great, i knew they would ! but they dont feel great. i have been having numbness in my legs arms toes feet, you name it , but i just recently started to have pins and needles in my butt cheeks (sorry) and some in my face and occasionally in my legs and arms. and when i talk even just a little it hurts just below my throat and feels tired. oh yeah and i shake all over and then my hand will twitch or my leg or foot i was told by a dr at one point that i had vertigo but that was about 6 mths ago and i still feel like i am swaying. i am sorry this is so long but if you took the time to read it i really appreciate it and thank you, i really just want to know if anyone with ms relates to this. there are other things that happen as well and it is starting to be an everyday thing with little release. i have an apt with internal med dr this week. i just hope he refers me for an mri.
I had a horrible experience. Where it did take about 2 hours of digging in my spine to get fluid. I experienced what it would feel like being electrocuted. If I knew I didn't really need it i wouldn't have had it. if I knew what I know now i would have never went to that visit.
I hear my case is a rare care but MS is suppose to be rare but here we all are ...
I have close friends that I have had since middle school and they also have MS.
Spinal Taps in general are not as bad as Heather's experience. I am not sure what purpose it is for someone to tell you a scary experience before hand. Usually the fear is the worst part. If you are really scared you can ask to have it done in a hospital under IV. I did and do not remember a thing.
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