Do I need ANOTHER LP??

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Do I need ANOTHER LP??

Postby Amylouio » Tue May 29, 2012 10:59 pm

Hello everyone, I am a newbie here and am not yet diagnosed with MS although the neurologist is 90% sure that is what is going one. To make a long story short I have been suffering 10 years, maybe longer (i'm 31 right now) from what I believed to be gastrointestinal disorder. I basically get flares of intense upper abdominal pain, feels like an alien is going to burst out of my stomach between my ribs. It hurts all the way to my back.

Well the last 2 years (due to finally having insurance) I have had ever test known to man done to rule out disorders, and everything always comes back normal. This is good, but heartbreaking to a person suffering with no answers and no help whatsoever. My father has crohns disease and so that has been ruled out from several tests.

Fast forward to now. I am currently 17 weeks pregnant and at around 12 weeks began getting horrid headaches, migraines from hell. I figured it was pregnancy related so did my GP. Was given a prescription for mild painkiller. I went home and the medicine did nothing, in fact my headache just got worse, so I was thinking maybe this was a bad sinus infection because it seemed to be getting worse and the painkiller did nothing for the pain. So to the er I went.

I thought it would be a simple in and out experience. But instead the dr ordered MRI and lumbar puncture (they thought I had spinal meningitis). The fluids came back normal, but my MRI was abnormal. They thought I had sudo tumerousis (spl?) and I was admitted. The neurologist the next day informed me that what the nighthawk team saw was incorrect and instead said I had white matter lesions (more than I should). She wanted to do another lumbar puncture to get fluid and blood work to rule out Lyme, lupus, Ms and some other stuff I can't remember. So I got yet another lumbar puncture (yes 2 in 2 days great fun).

The dr was an idiot that gave it to me and had to poke me 3 or 4 times to get the needle in. He them had me lay down with the needle in my back to check the pressure (I guess the day before it was really high, but they gave me the puncture while sitting up which gives an inaccurate measure). Once laying down he had to reinsert the needle and couldn't get it in, it was truly a horrid experience and I hope i NEVER have to go through this again. Well suddenly he says your done you can sit up now. And I ask he he collected fluids. The look on his face said everything "Oh S**T" He either forgot or it was not in the order, either way he explains well it isn't necessary because we have extra from the day before.

So later they came and drew some blood. Meanwhile I was admitted into an actual room was in the clinical decision unit (yes sounds really important lol). The next day the neurologist came into to talk with me and informed me they would have to do another lumbar puncture to get spinal fluid and blood within the same day.

For obvious reasons I was not happy about this.. I am pregnant for god's sake! Meanwhile pain from headaches was still out of control and so I was kept in the hospital for 5 days (got pain medication, plus steroids for 3 days) The next day another neurologist comes in (a bit too into himself) and explains that he doesn't think it's MS as my proteins looked fine and he thinks I'm just having migraines. I explain that until recently I've never had a migraine at least not this bad, nor even close. I tell him my only problem is my upper abdominal pain. He laughs and says oh yes it's migraines.

The next day I am released, still having horrid headaches but oral painkillers are helping. They also give me blood pressure medicine which is used to help treat migraines. 3 weeks later I get in to see the neurologist, They explain over the phone that I will not need to get another LP as they were able to run tests and they had an opening the next day (my apt was 3 weeks away). I go in to apt and after a lot of small talk, the neurologist shocks me by saying, we got your results back and they are all suggesting MS.

I really was expecting another "all the tests came back normal we don't know what is going on". They want to do an MRI of my spine and left it to me if I wanted to repeat LP. Of course I don't but I am confused as to if the results are accurate as they were taken on different days.

My question is what are chances of false positives if LP and Blood have 1 day difference? I asked neurologist and she seemed to be of the opinion that false negatives were more common, but she couldn't give me a straight answer. I said I wanted to re-due, but I was shocked and not thinking straight. I am still sore from other 2 punctures and I really don't want to get yet another one.

What is your opinion on me needing another LP??? When my husband asked what chance she thought I had MS, she said 90%. To me thats pretty darn high, but I just need to know if I should submit myself to more torture or accept the results??

Sorry for the length :) Long stories are sometimes hard to shorten, or maybe it's just me lol. Thanks for reading
Last edited by Amylouio on Wed May 30, 2012 8:55 am, edited 1 time in total.
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Re: Do I need ANOTHER LP??

Postby euphoniaa » Wed May 30, 2012 5:27 am

Wow, Amylouio, what an ordeal!

My quick opinion (I'm off to work soon) is: Do not, under any circumstances, allow those same stooges to give you yet another LP! The LP is just another tool to assist with diagnosis and will not give them an absolute, undeniable diagnosis even if they finally get the damn thing right! BTW, the Almost-A-Neuro guy who did my LP also exclaimed, "Oh, shit!", but that was while he was in the midst of jamming the needle into my spine. :smile: He still did it right and I had the suspected O-bands.

Also, welcome to the forum! And also, I hope you will take the time to edit your post by breaking it up every few lines to make it easier to follow and you may get more replies. Many of us have extreme vision issues that make it hard for us to follow large blocks of type. I hope I have time later to weigh in on the rest of your post when it's easier for me to read.

An MRI of the spine would be good, too. MS-type lesions are often pretty distinctive, although even lesions aren't always distinctive or plentiful enough for a diagnosis. Anyway, good luck with all this and best wishes on your pregnancy!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Do I need ANOTHER LP??

Postby want2bike » Wed May 30, 2012 5:58 am

Think it would be best to postpone anything like this until after the pregnancy. Even if they determine it is MS they should not put you on the drugs until after the pregnancy. These drugs are too toxic for the baby. If it is MS the best treatment would be diet. Check out the Dr. Swanks diet which is basicly elimination of saturated fat. Doctors are the third leading cause of death in our country and these seem like real clowns. Maybe if you can find a holistic doctor he could help you. If you have digestive problems might need a probiotic.

http://www.healingdaily.com/Doctors-Are ... the-US.htm

http://www.youtube.com/watch?v=ZAhu6oa_ ... ure=relmfu
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Re: Do I need ANOTHER LP??

Postby Amylouio » Wed May 30, 2012 8:50 am

Thank you for your comments. I will break up my posts in future posts. sorry about that. I do follow a low fat healthy diet and also go to a holistic doctor, but have not meet with him in awhile. He was the only one that agreed with me that I had major inflammation (somewhere)

Other ms symptoms I do have that I never thought much about.
1. Clumsy (I mean I fall over trip over my own feet, walk into walls, it's quite embarrassing).

2. Stiff neck/shoulders all the time, have gone to an acupuncturist and got many massages, but only helps for a few hours then i is back stiff as ever. (Just thought I have bad posture and need to work on, which I do).

3. Six months after the birth of my 2 year son I had a major flare of abdominal pain (er trip which started a series of tests) I do take probiotic but my problem is not digestive had that pretty much rued out, which is confusing as it does make sense.

4. This is pretty new, maybe 1 1/2 years ago, get tingling in fingers and toes, limbs go numb extremely easy, sometimes just by sitting still too long (again never though much about it).

5. Sometime when I take a step my right knee/leg (not sure where problem is) seems to lock up and I almost trip, hard to explain easier to show.

I'm sure I could think of other small things, it's crazy when i sit and think about it all of these bizarre symptoms, but they didn't really interfere with my life, nor cause pain so I just ignored it... Again the only thing that I did notice is my upper abdominal pain. I also get numb between my shoulder blades on my back, which is the same location as to where I get the cramping in my abdomen.

So my question is given this information, as well as the fact that spinal fluid had the "Ms rings" not sure what it's called, my blood results also suggest Ms and my MRI of the brain with lesions in several spots (They never said how many just that it was quite a bit more than should be) does it sound like MS and should I really subject myself to more pain? My insurance will only cover this clinic, I basically can't get a second opinion they could have to refer me.
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Re: Do I need ANOTHER LP??

Postby FLJhawk » Wed May 30, 2012 3:00 pm

I agree about delaying treatment with drugs until after the baby comes and you have ended any breast feeding. Thus, there is no need to rush into another spinal tap. But, yes, many of your symptoms do indicate MS, sorry to say.

For now, look into a good MS diet and see about taking the typically recommended Vit D3, Zinc, Magnesium, etc. Maybe Jimmylegs can comment about taking these as well as the other often recommended supplements while pregnant.

I hope all works out for you, but options are limited until after the baby comes. Getting on an MS drug later is something to consider, as you want to do all you can to slow down progression. Two kids while having MS that progresses will not be easy.
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Re: Do I need ANOTHER LP??

Postby lyndacarol » Wed May 30, 2012 5:17 pm

Amy – Welcome to ThisIsMS; euphoniaa, want2bike, and FLJhawk have given you excellent suggestions! Three lumbar punctures is almost barbaric!

You mentioned having had a flare of abdominal pain six months after the birth of your two-year-old. It is not unusual for women with MS to have a flare of symptoms shortly after giving birth. During pregnancy (especially the third trimester when the fetus is putting on weight) the mother's pancreas produces additional insulin. Because you report frequent upper abdominal pain that goes through to the back, I wonder if your GP has checked your pancreas; to start with, a fasting blood test for the insulin level (NOT the glucose level) can be done fairly easily. (The blood sample must be analyzed SOON after being drawn; insulin deteriorates rather quickly unless the sample is frozen immediately.) The ideal insulin test result would be under 3 UU/ML. If the result would be greater, I believe that ultrasound can be used to check the pancreas, without subjecting your baby to harm. Best of luck to you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Do I need ANOTHER LP??

Postby jimmylegs » Wed May 30, 2012 7:45 pm

hi and welcome!

yep ask me anything you want about nutrition. if you can, from the issues you describe i would have them look at your serum zinc, and serum magnesium levels first. bring the results here and i'll help you assess next steps. don't let them tell you the levels are 'normal'. if you read my 'signature' links below they give an idea of my approach.

also, maybe you can see if your dad can get a serum zinc test too. ask pointsnorth about zinc for crohn's :)
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Re: Do I need ANOTHER LP??

Postby Amylouio » Wed May 30, 2012 8:14 pm

Thank you again for your comments and post. While at the hospital they did draw blood, I need to get a hold of those results, I will post when I do. I think they may have checked zinc s well as others, I know I had low potassium and Vit D. I was put on a one a pill strong vit D for 4 weeks and after my neuro apt she also told me to take 5000 UI in addition to the other vit d.

As for the pancreas I have had that extensively checked, there is one other exam but I need to be put into twilight to check the functioning of it (obviously not during pregnancy). They have checked (many times, insulin, and proteins looking for signs of pancreatitis).

The reason is I was found to have pancreas divisium (which is a birth defect 10 % of population has only 1% ever develop chronic pancreatitis. I have symptoms but not clinical, basically everything is working fine. This has been a very fustrating time. I finially meet with a great GI dr. He seemed to thnk I was having crampng somewhere?? in my stomach, instestines or somepalce else and prescribed an anti spastic medication. I got this a week before I found out I was pregnant and the funny thing is ever since I became pregnant I have no more cramping pain in abdomen instead I developed a horrid migraine, which lead to MRI and evidence of lesions.

I have red about an MS hug?? Can anyone explain what that feels like for them, some info I found sounded similar to what I go through, but the neurologist said only if I have lesions in my spine would it be related, so she couldn't give me an answer as it if that was the reason for the pain. It fits though. started up really bad 6 months postpardum and ever since I get pretty frequent "flares" for lack of a better word. I just want to know whats going on with me. I am scared of the idea of MS, yet at the same time it is a place to start to begin healing myself.

I am afraid of the MS meds and wonder how neurologist feel about holistic medicine, are they understanding or are they of the belief that only drugs can help (this is my expierence of GI doctors) once I mentioned I go to a naturpath and they laughed at me. Really frustrating when you are trying to take your health in your own hands and help them out, by helping yourself..

Thanks again for all the great info, I have looked into the links, some really good stuff. I really appreciate this as this is all new and scary, but thankfully through sites like this it makes it a lot easier and I feel like I am not powerless in my own body. Thanks
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Re: Do I need ANOTHER LP??

Postby jimmylegs » Thu May 31, 2012 5:05 am

hi there, looking forward to seeing what you can dig up re results :) as for spasticity, magnesium does the job on that for me. in the research, it's shown to work even in severe cases like tetanus.

ms hug for me just felt like i had a giant elastic band around my rib cage. i only had it in '06, not since.

my neuro is condescending about alternatives (we have had some pretty funny chats) but i haven't bothered to go see him in years now. my naturopath has ms herself, but she didn't seem to understand me, i wasn't keen on her recommendations, and she clearly wasn't doing too well herself. some things she said turned out to be right, others i maintain my position :) as for my GP, luckily my naturopath and doctor work in the same building and collaborate, so from that angle, i have good buy in. my doc orders whatever tests i ask for and i don't have to bring in printouts of abstracts to back up my requests for tests any more. yay :) but, every person's situation seems to be different.

welcome again and i'm really glad you're feeling some control. you are the one that lives with your body 24/7 and you are in charge :D
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Re: Do I need ANOTHER LP??

Postby want2bike » Thu May 31, 2012 2:59 pm

There are studies that show patients taking the drugs did worse than those who didn't take the drugs. My belief is diet is the key to healing. You have to find the right diet for you. These doctors get paid by the drug companies so all you will get from them is drugs. It is all about the money with them. If you get on a good diet you do not need them anymore.

http://www.youtube.com/watch?v=GJyQTTZr ... r_embedded

http://www.greenliveforever.com/healthy ... tion-claim

http://www.overcomingmultiplesclerosis. ... gram/Diet/
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Re: Do I need ANOTHER LP??

Postby littlered13 » Mon Jun 11, 2012 9:40 pm

Amylouio wrote:Hello everyone, I am a newbie here and am not yet diagnosed with MS although the neurologist is 90% sure that is what is going one. To make a long story short I have been suffering 10 years, maybe longer (i'm 31 right now) from what I believed to be gastrointestinal disorder. I basically get flares of intense upper abdominal pain, feels like an alien is going to burst out of my stomach between my ribs. It hurts all the way to my back.


I have a lot of pain under/around my right rib cage. I have had an X-ray, Hida scan, and a CT scan to rule out liver problems. My pain doc finally said that it was "probably" due to the lesion on my spine.


They thought I had sudo tumerousis (spl?) and I was admitted.


Are you referring to Pseudo Tumor Cerebri? This is what they initially diagnosed me with (after my first LP). I ended up having to get two LP's. Why they didn't just test for everything at once is beyond me. (Oh wait, that's right. They want $$$$$$).


The next day another neurologist comes in (a bit too into himself)


A lot of doctors think they are some sort of a God, don't they? That irritates me to no end!


What is your opinion on me needing another LP??? When my husband asked what chance she thought I had MS, she said 90%. To me thats pretty darn high, but I just need to know if I should submit myself to more torture or accept the results??


I am so surprised they would even want you to go through that many tests, knowing you are pregnant. Whenever I go for an MRI, they make me do a pregnancy test. They have told me straight out that if I were pregnant, they could not do an MRI on me b/c it could harm the baby. Maybe it's b/c I have already been diagnosed and my MRI's now are just annual check-ups so they feel I really don't need an MRI b/c they already know what's wrong with me? I have explained to them time and time again that both my husband and myself have fertility issues and that there is no chance that I am pregnant (since we haven't gotten pregnant after 7 years of trying). None the less, they are always strict about the pregnancy thing.

I hope they figure everything out for you. This is going to sound weird, but being diagnosed with MS was one of the best days of my life b/c I FINALLY had a name to what had been wrong with me all those years!
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Re: Do I need ANOTHER LP??

Postby NHE » Wed Jun 13, 2012 12:38 pm

littlered13 wrote:
Amylouio wrote:What is your opinion on me needing another LP??? When my husband asked what chance she thought I had MS, she said 90%. To me thats pretty darn high, but I just need to know if I should submit myself to more torture or accept the results??


I am so surprised they would even want you to go through that many tests, knowing you are pregnant. Whenever I go for an MRI, they make me do a pregnancy test. They have told me straight out that if I were pregnant, they could not do an MRI on me b/c it could harm the baby. Maybe it's b/c I have already been diagnosed and my MRI's now are just annual check-ups so they feel I really don't need an MRI b/c they already know what's wrong with me? I have explained to them time and time again that both my husband and myself have fertility issues and that there is no chance that I am pregnant (since we haven't gotten pregnant after 7 years of trying). None the less, they are always strict about the pregnancy thing.


The concern during pregnancy is likely due to the use of the gadonlinium contrast agent that's used to highlight active lesions.

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Re: Do I need ANOTHER LP??

Postby littlered13 » Wed Jun 13, 2012 3:02 pm

NHE wrote:The concern during pregnancy is likely due to the use of the gadonlinium contrast agent that's used to highlight active lesions.


That makes sense. I wish they would explain that other than saying, "It's our policy". I guess it's not a big deal to have a pregnancy test, it's just a headache b/c I sometimes have a hard time peeing in the cup AND they have a hard time finding my veins (to do a blood pregnancy test).
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Re: Do I need ANOTHER LP??

Postby Amylouio » Thu Jun 21, 2012 9:41 pm

Thanks you all for replies... Its def. a scary time. Well I have since been officially diagnosed with MS. Yay for me ;) My headaches never seem to let up and the neurologist wants to give me an occipital nerve block?1? not sure how I feel about that. Not sure how i feel about any drugs right now. My problem is these darn headaches, I've gotten to point were pain meds don't help, i hate taking them anyways.

As for the MRI during pregnancy, its safe, its just no contrast for me, which if i am correct means that the radiologist must work harder at looking at pictures and they are unable to tell between new and old. My cervical spine showed lesions, along with lesions on brain, blood work and spinal fluid all point to MS. So here I am. I didn't need to have another LP, the neurologist tells me "Most Dr's would not have asked you to do it." O.k. thanks for stressing me out then. She said I have all the signs plus some.

This is strange to me as i have thought symptoms very severe?? Strange, I have just been "Clumsy Amy" for as long as I remember. Tingly hands/fingers and feet/toes, was just bad circulation. Its sad and funny how our mind makes up excuses for what ails us.

I am planning on going to Seattle to see an MS specialist that specializes in women's care or as they word it "women's issues" haha i hope that includes pregnancy. I guess I am "lucky" to live in pacific northwest as we have a lot of MS specialists, then again we have a high number of people living with MS...

I am going to embark on healing myself through diet, my problem is there seems to be no consitency as to what is best for MS. Vegan vs. Paleolithic, etc. I have an undergraduate degree in Anhropology and so I understand we evolved to be hunters and gathers so i think that would be the best way to go about it, but I must admitt I am at a lose for what is really the "right" one.
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Re: Do I need ANOTHER LP??

Postby want2bike » Sun Jun 24, 2012 7:09 pm

We as individuals must determine what diet is right for each of us. Dr. Swank spent 50 years showing the relationship of saturate fat(mainly comes from eating animals) to MS. Some people have to give up dairy and some have to give up gluten. By making changes in our diet and paying attention how our bodies respond we can get to the right diet. Dr. Swanks diet is the easiest to follow so start there and work your way into other forms of diet if necessary. It is important to understand our bodies need the nutrients in the fruits and vegetables to repair itself.

http://www.franksherwood.com/tnms.htm

http://articles.mercola.com/sites/artic ... nking.aspx
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