Dieting with Obstacles - MS? spinal tap for diagnosis?




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ronni62
01-20-2009, 08:30 AM
Hi! Thought I'd post this here as I know there are a few out there with MS diagnoses. After 16 years of relapsing/remitting-type symptoms, a neurologist had me do more MRIs and evoked potentials tests. The EPs came out ok as did all the blood work, but the MRIs now show several brain lesions as well as more lesions in my spinal cord (that's where they started 16 years ago and they said it was myelitis and would go away). Now, he wants to do a lumbar puncture to "confirm". My sis, who has confirmed MS, says her doc does not do the LPs anymore as they just rule out other things and don't confirm MS-it's the brain lesions that confirm the MS diagnosis, but they live very far away, so it'd be very hard for me to see her doc. She got the bad headache after her LP 20 years ago and had to have a blood patch to fix it (she said that was incredibly painful also).

I have a HUGE fear of the LP, as the 2 times they have had to do any kind of spinal injection on me, I had bad problems (in other words, my very understanding neurologist said, I have a 100% failure rate with spinal cord/needle procedures:(). But, the procedure here is "no LP, no diagnosis, no treatment".

So, anyone else with MS receive the diagnosis without the LP? Thinking about seeing if there are any neuro/MS specialists near here. Has anyone had success with the LP? Just looking for some advice and doing a little venting as well. Thanks in advance!


Shoshie
01-21-2009, 05:12 AM
Hi,

I have Multiple Sclerosis. I have never had an LP. I was diagnosed with a combination of positive Mri scans, namely lesions on both my spinal cord and brain, and clinical symptoms.
I thought that LP'S are not often done anymore.

Best wishes to you.

Shoshie :)

ronni62
01-21-2009, 07:51 AM
Thanks, Shoshie. Seems that the more progressive docs don't do the LPs and the "old-school" docs still want to do it. I was able to talk to the Mayo Clinic Neuro dept yesterday and they are taking my case, so may have more answers soon.


purpleorc
01-24-2009, 05:12 AM
I also have MS (secondary progressive) and I did not have a LPs to diagnose my condition. I was diagnosed in 1999 after an evoke potential test and MRI scan of the brain.

Lumbar puncture are only one diagnostic tool to aide the neurologist to confirm a diagnosis. They tend to be used less now that other tools are available. I have since had another MRI scan and I have lesions in the brain, and multiple ones down the spine.


I would suggest that you talk to your doctor and express your concerns about this procedure and this may deter them from using this form of diagnostic tool. If need be take another person with you for the consultation if you need moral support to question the doctor. My consultant wanted to do one and I said that I would prefer if this was not used and other diagnostic tests be done first to see if they could get definitive answer from those. I told him I would have a LPs done as a last resort and he was happy to do this. Has it happened the other tests did confirm it.

If you do have to have a LPs one big tip I can give to help prevent the severity of the headache afterwards is to drink plenty of fluid so you are very hydrated. With the fact in a LP they take some spinal fluid and this makes you more dehydrated so if your well hydrated it does help to some degree. I would be lying to you if I said that they were not painful as they are. (i know this has I had a medical background was a psychiatric nurse until I had to retired due to ill health). Dicuss with the doctor before hand if analgesia can be administered after the treatment or be prescribed for you to take if needed. Some peoples tolerance to pain is much higher than others.

I hope this has helped a little.

ronni62
01-26-2009, 08:48 AM
Thank you, purpleorc, for the good advice. When I go to Mayo (don't know when the appt. is yet) I will take someone along, even if DH can't go. I was just planning on going alone, but I know it's hard to remember everything you need to say and that the docs say. Thanks, again!

Sissy2009
01-26-2009, 09:03 AM
Best wishes as you face this difficult time. I've read that it's absolutely essential that people avoid artificially sweetened drinks and food products. There's evidence that artificial sweeteners especially in diet sodas contribute to or even cause MS! I don't know but I'm not taking any chances, because the only person I ever knew who developed MS drank massive amounts of diet soda and wouldn't give them up -- it's so hard because so many things are really addictive.And they give us some kind of comfort so I know it's super hard to do.The result was tragedy for her and the husband and children she left behind.
And I read that a caveman type diet like Neander Thin will supposedly prevent or cure MS.Like I said I don't know but the evidence sure sounds convincing.
paleodiet.com/ms/
mult-sclerosis.org/Paleolithicdiet.html

ps, also do a search for "Plant Flavonoid In Celery And Green Peppers Found To Reduce Inflammatory Response In The Brain" at sciencedaily

I don't know what flavonoids are but I think red grapes and berries are good sources, I'll try to find out.

I hope some of this helps anybody who's suffering with MS here.

alicat17
01-26-2009, 11:06 PM
Hi,

I have Multiple Sclerosis. I have never had an LP. I was diagnosed with a combination of positive Mri scans, namely lesions on both my spinal cord and brain, and clinical symptoms.
I thought that LP'S are not often done anymore.

Best wishes to you.


Ditto for me. Can you see another neuro? It took me quite a few to find one to my liking. It sounds like you should be on the meds.

happykins
01-27-2009, 03:17 AM
I was diagnosed with MS in November 08, just purely from the position and amount of active lesions in my brain. I ended up having a lumbar puncture in December, just before Christmas, but it was to confirm I did not have meningitis while in the ER. They took the excess fluid and tested it for Oligoclonal Band interpretation and IGG synthesis rate, both of which were very skewed.

However, I will say, that purpleorc is very right, in that people's pain thresholds are very different. That LP landed me in the hospital for 3 days, with major sinus infection headache, combined with the LP headache. Dilaudid is a great friend when you are in serious pain. Just whatever you do, should you have this done, do not be like me and let them not do a blood patch. The anesthesiologist felt that it wouldn't help me (translated to too many surgeries for the day and he was tired I found out later as I work there) when it would have at least relieved part of my symptoms. They did however give me 1 gram of caffeine in one day :P

I wish you all the best of luck with your illness, this disease is a bear to deal with, if for no other reason then the shear unpredictability of it. :hug:

ronni62
01-27-2009, 08:25 AM
Thanks for the replies! To answer some of the questions-

I never use artificial sweeteners, even when aspartame first came out (had a prof at the time who had worked on it for Monsanto and tried to keep it from being FDA approved, because of it's bad history). Will look into that diet.

I am seeing another neuro on Monday at Mayo in MN. I'm very shocked at how fast they have gotten me in, since I just talked to them a week ago-that's rare.

Holy cow-1 gram of caffeine in a day would send me to the moon!:lol: Thank you for the info about your LP, happykins, just in case.

Thank you ALL for your concern :hug::hug::hug::hug::hug:

valpal23
02-03-2009, 08:17 PM
i know i'm too late. but i was diagnosed without an LP. just an MRI and two seperate relapses. I was prescribed medication without a LP too. i was dx in 06. :huge: all the best

Thighs Be Gone
02-03-2009, 08:22 PM
Hey ya'll..just wanted to "weigh in" and say hello..I have two sisters, yep that's right TWO, with Multiple Sclerosis. One was diagnosed after a bout of Optic Neuritis--the other one had duplopia. Both had confirmed diagnosis with spinal tap. I had an MRI for a pre-screen sort of couple of years ago although I know it's not for certain, it was clean though. Anyway, fight the good fight ladies. I know first hand about this condition and don't have any additional info. to share with you unfortunately. Just know I am always here if you need to chat. :(

purpleorc
02-07-2009, 12:23 PM
One tip for going to see the doctors whether it be now or the future visits. Write a little list down for jogging your memory so you do not come out of the consultant kicking yourself as you forgot to ask X or Y.

Now ensure this list only contains the important things you need to ask or symptom you may have. Why I say this as some people take it too the other extreme and fill a big piece of paper with every ache , pain , twinge known to man :fr:. Doctors do not mind a small list as they know we all get nervous our brains go walkabout :eek: when we have our consultantion. This keeps me focused and reminds me to ask about certain things.

Sheila53
02-12-2009, 10:07 PM
Interesting thread and timely for me. I go in tomorrow for an MRI of my cervical and thoracic spine after an initial visit with a neuro yesterday. If those areas show no lesions, then the neuro wants to do a spinal tap. I have optic neuritis and three brain lesions on my MRI; however, I've had those lesions since my first brain MRI in 2000 with no symptoms. I actually have another neuro disorder called cervical dystonia. A person really shouldn't have two neuro disorders in one lifetime, don't you think? :)

Other than the optic neuritis, I have no symptoms except for electric shock-type pains that occur in my left hip area, which, I guess can be a symptom of MS?? The pain is much worse after certain kinds of exercise so I'd gone to an orthopedic doc last year who said it was probably something in my back and recommended strengthening my core area. So I don't really know what's going on with me for sure. Thanks for letting me ramble--I'm rather nervous about tomorrow's MRI results and the possible LP (the neuro said she uses a new type of needle that has eliminated headache in the patients she's, um, punctured).

ronni62
02-13-2009, 11:43 AM
Sheila-hope you come back and let us know what they find out. I have also had pain in the hip/low back/ legs but MRI of lumbar spine showed stenosis (narrowing of the canal) probably due to age or arthritis. No one thought it was MS related, but who knows for sure? I do know that my pains got much less after losing the first 30 pounds. I'll have to look up your dystonia to find out what it is. I do know that they are now saying that my initial transverse myelitis was really the first hit of the MS, but had to wait to see how/if it would progress, so some neuro issues just go together, I guess. Let us know how you're doing:hug:

WaterRat
02-13-2009, 03:11 PM
Hmm, I have 2 cousins and a friend with MS, and they were all diagnosed more than 10 years ago, all with LPs.

A little OT, but my DH has multiple myeloma (in remission for 9 years now), a cancer of the bone marrow, and one of the diagnostic tools is a bone marrow biopsy, which they take from the pelvic girdle through your back. He says it's the most painful thing that he's ever had. He's had several though never without anesthesia after the first one! :)

valpal23
02-18-2009, 10:30 PM
Interesting thread and timely for me. I go in tomorrow for an MRI of my cervical and thoracic spine after an initial visit with a neuro yesterday. If those areas show no lesions, then the neuro wants to do a spinal tap. I have optic neuritis and three brain lesions on my MRI; however, I've had those lesions since my first brain MRI in 2000 with no symptoms. I actually have another neuro disorder called cervical dystonia. A person really shouldn't have two neuro disorders in one lifetime, don't you think? :)


actually among the MS forums I frequent, it's quite common for additional neurological illnesses to be dx or develop afterwards - though one would think karma would kick in and prevent crap like that.

optic neuritis eh? I had that for a couple months in 05/06... can be very painful - hope you're doing okay!

Cybertyper
02-27-2009, 09:10 AM
I have MS as well. I had MRI, evoke and spinal tap. Since no one test can rule out MS, I had them all. The evoke and spinal tap were normal. However, a repeat MRI 3 months later showed new lesions and a 2nd relapse. My general neuro wasn't prepared to call it MS, but sent me to an MS specialist at IU. After further history, I had a bout of 6 wks of vertigo and he classified that as my 1st relapse, giving me a total of 3 flares. He started me on medication.

The initial puncture for the tap did hurt, but I had no problems afterwards. I did make sure I was well hydrated, had been told that by someone prior to the procedure. Standard for my doc is bedrest for 24 hours after the procedure to allow for healing.

Good luck