sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I saw a new neurologist a couple weeks ago. My MRI, EMG, and autoimmune labs all came back normal. He says that I need to get a spinal tap to r/o MS and to look for signs of ongoing inflammation or infection.
I was diagnosed with vagal neuropathy several years ago. My doctor thinks that most of my symptoms are related to autonomic and small fiber neuropathies.
He thinks that I might benefit from a trial of IVIG. But I have to get that spinal tap first. He said that he needs it to support his insurance request for IVIG.
Thing is I don't want to get a spinal tap. I'm all too aware of the potential "rare" complications.
If this is a test that I really need then I have to get it done ASAP before my good insurance coverage ends in June.
My neuro is in CT so he sent me an RX to have the spinal tap done by an interventional radiologist here in OH.
What do you all think? Any advice?
Posts: 5237 | From here | Registered: Nov 2007
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posted
If you have a normal MRI, I am assuming of brain and spinal cord, what is the point of having a spinal tap? Don't you need to have demyelinating in the brain and/or spinal cord for MS? I have brain lesions, the neurologist repeated MRI of brain and also added spinal cord. I had no symptoms of MS. She wanted to do a spinal, but in the interim I got a positive dx for Lyme by a different physician, so what's the point of a spinal? If you feel you would benefit from IVIG and undergoing a spinal tap is the only way to get it, then proceed. Otherwise, don't.
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lpkayak
Honored Contributor (10K+ posts)
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posted
no-it doesn't r/o ms...it is only 1 of 3 things that does...and it can be really bad---search on here
search spinal tap and the other word they call it....sorry foggy??????
oh-lumbar puncture...or somethng like that
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Sammi
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posted
Is the neuro going to order the IVIG regardless of the results of the spinal tap or do you need to have specific results? If specific results are needed, what happens if you do not have that result?
Can't a Lyme doctor order IVIG?
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I believe IVIG is very hard to get past insurance. I doubt any LLMD can do it as their reputations generally aren't too hot in the non-Lyme community.
I have a situation in which a provider wants me to have a spinal tap too. I'm pondering the decision. Lpkayak, many, many make it through it just fine. Yes, there are complications, but fear shouldn't stop someone because of the 'horror' stories on Lymenet.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
My husband is now going to have a spinal tap. We were against it at first but the neurologist we are seeing wants it done. Says he will take a blood sample also and send that same sample to 2 seperate labs - Igenex and MDL to look for co-infections.
He already has a recent abnormal spect and MRI so I guess this doc just wants to run the gamnet.
I feel confident with Dr. R's years of experience and his reputation and also having it done at a Jersey Shore Medical Center which is one of the best hospitals in my area.
I believe if your going to have the tap done it better be with one of the best.
He told us plan to spent 4-5 hrs. in the hospital. They make you lay still the whole time for hours after the procedure and he said we cannot move a muscle either.
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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lpkayak
Honored Contributor (10K+ posts)
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posted
its not so much the fear. i can deal with pain if there is a reason for it. llmds have said you rarely find Bb. its a pcr! and it won't dx ms.
why do it?
i don't care...its just we're in enough pain. it makes me sick to see ppl put thru unneccessay paina and risk cuz docs w/o brains follow the rules so the rich get richer
(ps-i'm having a bad day)
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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posted
he will take a blood sample also and send that same sample to 2 seperate labs - Igenex and MDL to look for co-infections.
YES-THAT IS WHAT I HAD DONE 20 YRS AGO. AND IT WAS POS. THE LLMD WAS VERY SURPRISED. BUT INS STILL DENIED IV. IT DIDN'T HWLP ME AND KEPT ME IN BED FOR 2 WEEKS
He told us plan to spent 4-5 hrs. in the hospital. They make you lay still the whole time for hours after the procedure and he said we cannot move a muscle either.
GOOD TO KNOW THIS SINCE I NOW LIVE NEAR THIS HOSP
I WAS RUSHED UP...PUSHED IN A WHEELCHAIR TO MY CAR AND THEN TOLD REMEMBER TO LIE DOWN WHEN YOU GET HOME...HOME WAS 3 HRS AWAY. I LIED IN THE BACK BUT IT DIDN'T HELP.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I appreciate everyone's honesty.
I would rather not have the spinal tap (or any other medical procedure...) but I will do it if I really need it. So how do I know if I really need it?
My neurologist recommended the test, he is in another state and will not be performing the procedure himself so he is not being motivated by money. If I have the spinal tap it will be done at a local outpatient interventional radiology center.
He says I need the test to help rule out other problems and support the request for IVIG. If the results come back completely normal then I don't think he will be able to prescribe the IVIG. Then I will have to see an immunologist for further testing.
I feel pressured to make this decision because my current insurance coverage is good and I've met my deductible. In June I will have to switch to another plan.
I just want to be well.
Posts: 5237 | From here | Registered: Nov 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Did you or your neuro bother try calling your insurance to see if covered?
You may not need to go spinal tap if other markers show IVIG is necessary.
sometimes we make things so complicated.
good luck
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Could you see an immunologist now? Are your subclasses low?
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lpkayak
Honored Contributor (10K+ posts)
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posted
My neurologist recommended the test, he is in another state and will not be performing the procedure himself so he is not being motivated by money. If I have the spinal tap it will be done at a local outpatient interventional radiology center.
iI DIDNT MEAN YOUR NEURO IS MAKING THE $-ITS MUCH BIGGER THAN THAT...
"OUTPATIENT" IS LOOKING FOR TROUBLE-ITS WAHT I DID AND THEY RUSHED ME OUT...IF YOU CAN FIND SOMEONE WHO WILL MAKE YOU STAY DOWN AND QUIET FOR A LONG TIME YOU HAVE A BETTER CHANCE
BUT PLEASE CLARIFY IF YOU REALLY NEED IT...I DON'T KNOW MS BUT I DO KNOW THIS ONE TEST WILL NOT DX YOU FOR IT...HAVE YOU HAD THE OTHER TESTS YET
GOOD LUCK WITH YOUR DECIDION. SORRY YOU ARE SO SICK.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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shouldn't VN be accompanied by almost strictly vagal lesions? CN 10-/12??
did past MRIs show more active lesions other places? any info supporting PVVN?
dunno much about MS (other than my hubby was dxed with it) but, when is a spinal tap or a LP really used as a definitive dx for MS?
we are steering clear of that, for now-
hope you are feeling better with your treatment sammy? CHIN UP!!!
best,
still clueless
-------------------- Change is inevitable Posts: 77 | From France | Registered: Jan 2011
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chiquita incognita
Unregistered
posted
I can't and won't advise what you should do, but will tell my own experience.
A) The spinal tap was not painful, at all B) HOwever I was sore in my lower back for several months thereafter C) If headache develops or persists thereafter, go to the hospital and check in. They need to take care of you for the event that there is any leak D) I had no complications and no problems afterward. I did have just a mild headache, but it wasn't serious and I opted to carry on. It was okay at least in my case (can't advise anyone else, caution is always wise) E) After the spinal tap I was dizzy and light-headed. My neurologist said this is normal because fluid has been withdrawn from circulating around your brain. The dizziness and light headedness was gone in a short time thereafter. I can't remember if it was hours or 24 hours, but it did go away.
When I looked at the cerebrospinal fluid in the vials, I was impressed by how crystalline and beautiful it is. MOre clear than water, I thought. It made me think of crystalline images circulating around our brain and spinal cord. A lovely image.
I'm not saying it's all lovely and benign. Caution is probably wise. Perhaps ask several doctors for their opinions. Second opinions can never hurt.
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posted
With MS, from what I know... You are more likely to have Lesions on the MRI, than to find something in the CFS.
They looked at MS with me as well. I have had a spinal tap... It was not fun!!! I got a spinal headache, and had to have a blood patch done to relieve it.
Another thought.... There is a certain urine test I believe a urine phereisis?? sp? That can look for similar things as the lumbar puncture will for MS. My Dr was looking at doing that because I had already had the LP, and my symptoms were getting worse, months later.
If you do get a spinal tap.... words of advise, as I basically had two done, (blood patch is done same way). An experienced Dr. makes a huge difference.
I had the first one done under flouroscopy, and it hurt soo much. He moved the needle around constantly, and zinged my nerves, and moved the table up and down, jerking me throughout the entire process (15-30 min).
And then later after reviewing the procedure notes, I found out that he used a 19 gauge needle. All research shows to use 21 gauge or smaller bored needles to prevent spinal headaches.
The second Dr, was an anethesiologist. he did the blood patch. Which is where they draw blood from your arm, and then inject it directly into the site of where the lumbar puncture was. He was Awesome! There was pressure. And It stung when he numbed me. But, that was it!!! I so wish I had him take care of me the first time.
Good Luck
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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chiquita incognita
Unregistered
posted
GOOOD LORD!!!! 30 minutes!!!! Oh my god, that guy was inexperienced and it's amazing you didn't have more trouble afterward! He sounds like a sadist, ugh!
For me, the spinal tap took moments. It was quick and painless. Yes there was a feeling of pressure, I forgot about that. But no pain at all, in my case. A minor prick but nothing bad, in fact getting blood drawn had more sensation than the tap.
I had a very good doctor, and he was as sweet and gentle as they come. I guess a good doctor makes all the difference! Whew.....
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lpkayak
Honored Contributor (10K+ posts)
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posted
dunno much about MS (other than my hubby was dxed with it) but, when is a spinal tap or a LP really used as a definitive dx for MS?
IT ISN'T!!!
i am a little calmer today. i had spinals many years ago for two baby deliverys. i was in pain, in labor, huge...and they had me lie on my side in fetal position to do the spinal. NO PROBLEM WITH EITHER!!!
THEN many years later...trying to get IV for lyme...i was tortured at westchester medical
they had me lie on my stomach in a wierd position. i was obese. it put pressure on my aorta and was incredibley painful and i had trouble breathing. they kept yelling at me not to pass out. i told them to stop and they said no we can't. we have to do it. they moved the needle around a bunch like the above poster said. i was in the room 45 min...it was hell.
AND IT WAS POSITIVE. BUT I DIDN'T GET THE IV CUZ OF INS
and i was miserable in bed for 2 weeks...alone...noone said to go back for patch or whatever...it was 3 hrs away
i'm just saying...thinnk this thru...its the hospital that will make the money. they use you as guinea pigs for inexperienced docs/students. it sucks...and for no reason
take care of your self.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Ci- I had nerve pain for about 2 months afterwards. As well as my lower back hurting for about 3 weeks. Walking the stairs to my apartment was very difficult (one step at a time) for about 1 1/2 weeks.
I suppose i didn't think of mentioning that part of the pain, because I deal with pain now so often, and stair walking now is difficult for other reasons... ahh life.
I also had 2 c-sections and both times had to have spinals for them, they are similar. Only difference is that they are quicker, and you get something good in return
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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posted
Many on this board are uneducated about MS. Yes, a spinal tap is a very good aid in the diagnosis of MS. I also assume you've had an MRI done?
Definitely get the spinal tap, a neurologist can tell a lot from the results.
Worst thing that happens with a spinal tap is you have a headache for a few days.
Posts: 306 | From NY | Registered: Sep 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
My initial symptoms were GI and neuro. They appeared suddenly about 7yrs ago. My doctors though I had an infection but they didn't know what. No one thought to test for Lyme until years later. The vagal neuropathy was diagnosed after an extensive GI workup.
If I'm understanding correctly, the spinal tap has not been a helpful diagnostic tool for anyone here, right? I thought it might help prove active infection, inflammation or autoimmune response?
I'm going to try to put the lumbar puncture on hold. Try is the key word here because my parents are pressuring me to get this done now. When I f/u with my LLMD next month I'll ask him if he thinks I need the test.
In the mean time I'll try to get in with an immunologist to investigate my history of low IgG.
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sammy
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posted
Sorry nybasketball, I walked away from the computer then came back and posted so I didn't see your comment right away. Thank you for sharing your honest opinion.
I really don't know what to do here. I wish there was an easy way to know if this test is really necessary. Probably won't know unless I just do it.
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lpkayak
Honored Contributor (10K+ posts)
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posted
Worst thing that happens with a spinal tap is you have a headache for a few days.
I'M SORRY BUT THIS IS JUST NOT TRUE!!!
sammy...i didn't know you were not an adult.
could you or your parents possibly call the llmd and ask their opinion???
is the neuro the "famous" lyme literate one?
i don't want to get between you and your parents. i considered IVIG and decided against it-for me-but i am so foggy right now i can't even tell you why
i'm going to make some calls and get someone more knowledgeable to come by
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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quote:Originally posted by lpkayak: [QB] Worst thing that happens with a spinal tap is you have a headache for a few days.
I'M SORRY BUT THIS IS JUST NOT TRUE!!!
- nyb .. then you haven't read the "spinal tap nightmare" experiences I have posted here many times.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ok-so this is how you dx ms:
How is multiple sclerosis diagnosed?
Due to the broad range and subtleties of symptoms, multiple sclerosis may not be diagnosed for months to years after the onset of symptoms. Physicians, particularly neurologists, take detailed histories and perform complete physical and neurological examinations. �MRI (magnetic resonance imaging) scans with intravenous gadolinium helps to identify, describe, and in some instances date lesions in the brain (plaques).
�An electro-physiological test, evoked potentials, examines the impulses traveling through the nerves to determine if the impulses are moving normally or too slowly.
�Finally, examining the cerebro-spinal fluid that surrounds the brain and spinal cord may identify abnormal chemicals (antibodies) or cells that suggest the presence of multiple sclerosis.
Collectively, these three tests help the physician in confirming the diagnosis of multiple sclerosis. For a definite diagnosis of multiple sclerosis, dissemination in time (at least two separate symptomatic events or changes on MRI over time) and in anatomical space (at least two separate locations within the central nervous system, which can be demonstrated by MRI or neurological exam) must be demonstrated.
so i think-and it was said above by those who know more than me about ms...if mri is neg...a spinal tap won't get you the dx
and you havent had that electo test yet either
do you know why doc thinks igiv will help you? is it cuz of lyme? if you expect spinal tap to prove you have lyme i think there is 20% chance
google "how is ms diagnosed" and maybe you will find info to show your parents
good luck. these decisions are hard for all of us.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I'll reiterate spinal taps are a very safe, simple, and basic procedure. Many on this site are very paranoid about everything. Have there been a few complications on spinal taps? Sure. Same as every other procedure in the world.
Definitely worth it, a ton you can tell from a spinal tap that you cannot with anything else. Don't let everyone's paranoia get to you! If a neuro wants it done, its for a good reason.
It's one of the more safer and basic procedures around.
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