Multiple Sclerosis (MS) Support Group
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There may come a time in your life where you need to have a spinal tap. If you must, then you must. But exhaust all other options first.
I had a useless one done. I had already been diagnosed with MS for 10 years based on many factors, by an MS specialist. Then, I had to switch doctors (he is a sleep disorder specialist) and this a$$hole said I did not have MS but rather sleep apnea without even looking at my MRIs, examining me or discussing my symptoms. He said the only test he would go by is the spinal tap.
I should have said no. I knew he was a quack. But I was in such an emotional state, I agreed.
A month later, I cannot bend without pain. There is sever nerve damage done. A part of my spine is completely numb. and then pain radiates beyond that point. I am in constant pain.
I am not sure of it was the spinal tap or the blood patch I had to have afterwards that did the damage. But her ran an unnecessary test and %@#$! me over for life.
I am lucky, I guess. I could have been paralyzed.
So, if you must have a spinal tap, have one. But do some serious thinking about it first. Ask questions, make sure it is a LAST resort.
I had a useless one done. I had already been diagnosed with MS for 10 years based on many factors, by an MS specialist. Then, I had to switch doctors (he is a sleep disorder specialist) and this a$$hole said I did not have MS but rather sleep apnea without even looking at my MRIs, examining me or discussing my symptoms. He said the only test he would go by is the spinal tap.
I should have said no. I knew he was a quack. But I was in such an emotional state, I agreed.
A month later, I cannot bend without pain. There is sever nerve damage done. A part of my spine is completely numb. and then pain radiates beyond that point. I am in constant pain.
I am not sure of it was the spinal tap or the blood patch I had to have afterwards that did the damage. But her ran an unnecessary test and %@#$! me over for life.
I am lucky, I guess. I could have been paralyzed.
So, if you must have a spinal tap, have one. But do some serious thinking about it first. Ask questions, make sure it is a LAST resort.
I told myself that if I was ever asked to have a spinal tap that I would not have them take fluid out of my body. Your story has confirmed my decision about a spinal tap and I will never get one.
Thanks and sorry that had a very bad experience.
I sure hope your pain subsides soon. I did just want to respond to this post so that other's wont be terrified to get one if need be. I had one done in May of last year after my MRI (which showed 11 lesions) Its a procedure done to rule out any other diseases.
My LP was quite tolerable. In fact I didnt even realize the Dr. had inserted the needle. The whole procedure took about 30 minutes. Went home, rested, with the only side effects being a very slight headache. In my case 5 well defined gamma restriction bands were found a finding that is supportive evidence of MS. That and the MRI as well. Like I said, I am so sorry about your experience and I truly wish you the best!! But I just dont want people to be freaked out if they are soon facing this procedure. There are risks in everything we do & this is a diagnostic procedure that helps in determining our disease more accurately.
My spinal tap went off without a hitch. I experienced no side effects from it, however it was done by a neurologist that had over a decade of experience in giving lumbar punctures. I was not in a state to question anything that was happening to me, but my mom demanded that it was the doctor that did it, not his neurologists in training.
If you have to have one, make sure that you're not getting it done by a student, but by someone with experience
But this was a 2nd one and not needed. I guess what my warning is... as with any invasive test, make sure it is necessary.
Do some serious thinking. Both for having it and not having it.
If you have it and it is not necessary, you could suffer side effects.
If you need it and don't get it, it could prolong getting a much needed diagnosis and therefore put off receiving proper treatment.
My theory is, is you already have a confirmed MS diagnosis, as I did, there is no reason to have one. But my neuro had me so upset that day, I did not think clearly when I agreed.
If you do not have a clear diagnosis and this step is needed, then you would do yourself a great injustice to not have it done.
The actual procedure was not that bad, I just happened to have one of the rare side effects. And it just upsets me because it was not a needed test in my case.
And smathie is right, know who is doing your procedure. Demand the best.
Doctor's make money from doing procedures. I see it all the time at the hospital. Procedures that are unnecessary and sometimes painful or risky for the patient, but still fall within the guidelines of what is usually ordered, or more importantly what is paid for by insurance of other medical coverage.--not always what is best for the patient.
Oh yeah, had the lovely experience with the neurologist and sleep study bull.---
My first neurology appt. was set up; I had a two month wait to see the neurologist who specializes in MS. Wow!! felt lucky that I was going to be seen by someone who specializes. (I was referred by a friend who has had MS for years, and she loves him), When I went to the appointment he never even asked me what my symptoms were. The first thing he did was ask me if I had trouble sleeping and prescribed a sleep study. I walk out of the office holding back tears, made it to my care and totally broke down weaping like a baby. I had waited two months in the middle of my first exacerbation and still had no help. I was able to see my current neurologist a couple of weeks later. I told her about the first doctor and what happened. She told me that he is known for the sleep study "center" that he and his partners have opened. He's getting very wealthy on that center...they make $10,000. for each study they perform.
I feel so lucky to have my neurologist. She prefers a minimally invasive approach and is into alternative therapy as support to regular treatment. She takes the approach with me that I drive and she offers support and direction when it's needed, but I always have the wheel in my hands. I'm not sure this approach would work with someone who doesn't have a medical background.
I'm very sorry about the pain your having after the LP. It may go away with time.
Why was the doctor doing another LP if you have already been diagnosed?
He bragged on how he undiagnosed 5 other of my old MS specialist's patients and said she was not a real MS dr as she had no official training.
All I know is she "graduated from Georgetown University School of Medicine and completed a residency in neurology and a fellowship in multiple sclerosis and movement disorders at Georgetown University Hospital. She was an assistant professor at West Virginia University and served as research advocate for the National MS Society."
She does clinical trial and has since left WV and is working at Providence Multiple Sclerosis Center in Portland, Oregon.
The first word out of his mouth was, My name is Dr **** and you do not have MS.
My test was negative, which I already knew, so was my first one. I asked my old neuro about it and she explained that it is not conclusive and I have too many of the other markers, lesions, abnormal evoked response, relapses, symptoms and so on that the LP is not needed for a dx and she explained how in 10% of the people it will never be positive.
She said it would only matter if the other indications were not present, but mine was obvious.
BTW, Lori, gave an excellent explanation of what I was trying to say. When you should and should not have an LP. It is sometime crucial if the other indications are not obvious. In fact, it has been known for some people to have MS and no lesions show up on the MRI. Thus further testing is needed.
I read that the mri does that now. it seemed that the LP was a relect of a time gone by & i read most doc's order one becauese the patients want it not that the doc's due.
it would seem those post written om=n message boards, some diagnosedf 10 years before when the LP was neede.
the history of ms testing..first it was a hot bath test to detemine if meurologfical function decreasewd in the heat.
progress happened and then it was the LP.(now you would think it crazy if a doc had you observed while you took a hot bath)
progress happened again and it has become the MRI. in the future you will think its crazy to order an LP to diagnose MS.
From this 2009 differential diagnosing procedure, it said it can be used as supporting evidence if the diagnosis is uncertain. I'm thinking all the post's i read about credible doc's ordering an LP were form people who were diagnosed a long time ago or did not have clear MS evidence of MS.
So wee were both right, those that said an MRI is needed, their MS was less definitive & i was right when i believed my doc who said i don't need one!
if a person is so uncertain of their MS diagnosis, that they need the confirmation on LP, i suggest counseling to get acceptance of their illness. I think counseling would have a better pay back, better ROI(rate of return)
2009 differential diagnosing guide....
http://msj.sagepub.com/content/14/9/1157.abstract
on message board in 2004 i read thatr a credible doc would order an LP which my doc didn't do. not MRI as I incorrectly wrote....
and pretty much as everyone is saying in this thread, if you need an LP get on but make sure you understand why it is needed, because most of the time it is not needed to diagnose MS.
with the stronge 3t mri's comming out they are gonna be needed even less.
much of their use is driven by patients who do not understand the test and think they have to get one to have MS(because they listen to old timers with MS describing how they were diagnosed)
doctors trying to make a few extra bucks...
and insurance companies needing it as "proof" to cover MS treatment. One woman told me her doc said she didn't need an LP, but the doc said she would have less fighting to do with the insurance company if she had a positive LP. so she got one & luckily it was positive.(could have ended up negative, luck of the draw).
So I refused the tests and went to a MS specialist who agreed with my first doc that I had MS. I have NEVER had a spinal tap and have heard awful things about it. Some people cannot get the dx without it, but I did not need it and do not think that it is necessary. It CAN be painful. Some people have had painful experiences and others not. I would prefer not to have one. In the end, I am the person who has to suffer the consequences. So I agree with Tarabunny, and that is, if you don't need it, don't get it. It is not always necessary. Try the MRI first. And I knew that I did not have syphillis or lymes disease (more of that other doc's ideas). That would have been a waste of my time and money.
I totally agree with Tarabunny on this issue. No spinal tap for me unless absolutely necessary. At this time, there is no reason for me to have one.
My MS diagnosis was made without even a hint of an LP. I was ready if it had been. My MS neurologist just broke from a major teaching hospital and probably hasn't been corrupted by $$$ like some are. Not to paint then all with the same brush but their are greedy in every field, even preachers.
I've had to do three LPs in the past when I was in PA school. In some was, it is the preparation and running the procedure over in your mind first as to where and how the spinal needle will be place. You go by landmarks. A lot of tissue (being polite) obliterates landmarks. If they have a big pad of that same tissue in front it keeps them from doing the sideways equivalent of a crunch narrowing the path where the needle goes. Some people really need to have it done under IV sedation as they are so jumpy just touching them and they are off the gurney. A little scoliosis adds some problems. And lets not forget arthritic spines with spurs and bones and stuff not where they are suppose to be. Push the needle in and it goes clunk and you have an Excedrin moment. The actual needle stick itself, if all goes right, is easy. You can actually feel the needle when it breaks thru into csf.
A lot of the headaches are from people getting up to fast. Not good. It takes hours. On rare occasion to much CSF leaks out. The have to check pressures, collect multiple tubes sometimes for whatever. Sometimes you end up having to do a blood patch over a leak.
I suppose one of the worst is a bloody tap. Blood in the CSF screws up a lot of tests. The test, not the people. The high Tesla MRIs seem to be the gold standard now, if enhanced to show active inflammation. I wounder if these have anything to do with Nicoli Tesla and his Tesla coil. IS THERE AN ENGINEER IN THE HOUSE?
There should be enough evidence in the McDonald criterion what with MRIs to mostly avoid an LP.
Forgive me, I just sort of did a quick skim on other replies. Before I have a procedure done, I always check on how many doc has done, what the outcomes have been, how often doc does them. Many factors play in to a patients outcome, not all of those factors are in the docs hands.
You need to let doc know of your post tap problems, as soon as possible. I hope things improve for you very soon!
I had one, and I believe that although the tap was not pleasant, it did help the dr. to determine the lesions in my spine, and the fact that MS was (and is) still raging within my body.
I have not experience pain from the spinal tap, and I just want to mention that although the procedure is horrid, not everyone has continued pain from it.
I felt my choice to have it done was helpful for my treatment, as it gave the doctors a better view of what my body is going through.
just my two cents worth.
sheriz
I don't think a lumbar puncture would have ever been necessary. It just makes them feel better. If you have a good doctor they can diagnose without this.
I certainly hope the best for you and I hope that you are able to get some relief.