Not diagnosed...Yet!

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Not diagnosed...Yet!

Postby Hippiechic » Thu Jan 18, 2007 5:51 am

Hey all,

I am so glad to have found this site. I have been reading a bit and see that there are others in the same boat as I am and it makes me feel better that I am not alone in this. :)

I am a 27 year old single mother of 3. About 5 years ago after a car accident my docs did an MRI and found a cyst in my brain stem. It was no biggie, though and they decided to just monitor it with regular MRI's. About 6 months later I started getting bad migraines. My neuro said it was probably caused by too much stress. After about another 6 months, my hands and feet started falling asleep even while walking or using my hands. Then my cognition started to go. It started taking me just a little longer for my brain to process what someone was saying when they were talking to me. My hands and feet got worse and the tingling was all the way up to my knees and elbows. My neuro ordered another MRI and an AEEG. The MRI came back with another cyst and a lesion and, "several irregular foci" (whatever that means) and the AEEG came back normal and my migraines had gone away so my doc said see you in 6 months. At that point I decided that I was sick of docs and sick of MRIs and of feeling like something was wrong with me and then being told that it is just stress. So I stopped going to the doc and just started trying to exercise more and take herbal supps and vitamins. Well, that helped some but my symptoms kept coming back and new ones, too. I started getting "shocks" down my left leg and muscle spasms and weakness and OHHHHH the fatigue!! I would wake up in the morning after a full nights sleep, get my kids to school and then be so worn out I couldn't get anything else done that day. This went on for a while. THe symptoms would come and go. Sometimes I'd have them for weeks sometimes months and they would go away sometimes for weeks sometimes for months. Anyways about 9 months ago my symptoms became more severe, night tremors that felt like my hold bed was shaking, more and more spasms in my arms and legs, stabbing pains in the left side of my head, shocks down my left leg, severe pain in the left side of my head and down my spine and left leg. It got so bad sometimes I couldn't walk. My balance was off and I found myself walking into things. I'd get shocks through my shoulder blade into my chest and I'd have to keep my arm still because if I moved it I'd get shocked again. I also dropped 40 pounds in 2 months without diet or exercise. (I didn't quite mind that symptom, only I am the type of person who could exercise and diet all the time and still gain weight, so this was odd to drop that much weight). I decided I better go back to the neuro. This time he did an MRI, another AEEG, a full body EMG. The MRI was stable, the AEEG was normal and the EMG showed nerve damage in my neck and back on the left side. My bloodwork came back as very low B-12. My neuro prescribed B-12 injections, provigil, vicodin, and now Lyrica. He's also going to do an MRI of my back and another EMG. So I am kind of still waiting and still so frustrated. My symptoms still come and go but are here more often than gone and it seems I am soooo tired and weak all of the time.

I'm gonna keep following up with my docs and in the meantime I think I will hang out here with you all, if you don't mind. It helps to know that others understand what your going through. I appreciate all of you.

Peace and Love!
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hellloooo!

Postby jimmylegs » Thu Jan 18, 2007 6:04 am

hiiii hippiechic!!!!!!!! i am a hippie chic too. hugs!

b12 i hear you there. what are your dietary habits, if you don't mind me asking? i think we might have looootssss in common. mine was below 75 at its worst.
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Postby Hippiechic » Thu Jan 18, 2007 6:23 am

Hi jimmylegs!

I try to eat healthy. Lots of lean meats and veggies. Some carbs, but I try to eat mostly good carbs like oats and whole grains. I must admit though that if I eat 2 small meals a day I'm doing good. Usually, I am just so tired that when it comes down to having time to eat or having time to nap, sleeping always wins. I have been getting the B-12 shots for 2 months now, and feel no difference. I take the B-12 supps daily, too. My doc said it would take 6 months for the B-12 injections to work. So maybe I just need to give it more time.

Peace and Love!
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more q's

Postby jimmylegs » Thu Jan 18, 2007 7:03 am

dietary sounds good for quality - but quantity... yea, 2 meals... maybe the amounts aren't enough? do you omit caffeine/alcohol/smoking? do you drink filtered water or mineral water?

do you know if you have an absorption problem with b12 or if it's a dietary intake thing? did they do any testing for parietal cell antibodies, or schilling test, or anything like that?

do you know what your iron status is? so tired... anemic maybe? i used to be verrrry tired when my diet was the worst. i always thought i needed a nap but i in fact needed fuel.

hope the injections do the trick, or at least get you started on the road to good health. do you know what your b12 level was exactly, before they started the injections? and what are they saying is your target level?

i guess you know that b12 deficiency is the main differential diagnosis for ms? if so you are looking good from that angle. did they do a lumbar puncture on you? that's how they figured they would nail me - oligoclonal banding in the cerebrospinal fluid. a sign of chronic low-grade inflammation of the central nervous system. not found in b12 deficiency alone.

anyway i have to scoot off to class, ttfn!

legs
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Postby REDHAIRANDTEMPER » Thu Jan 18, 2007 10:50 am

hippie,
one welcome to the group....and second know what ya are going thru...have the same symptoms that ya have had..still doing mris and stuff on me...it gets frustrating but everyone is so wonderful here that it keeps your spirits up when ya get that way......if ya need to talk i have three boys here and am single so know the feelings.......hope ya get some more news soon

chris
waiting for answers
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b-complex

Postby jimmylegs » Thu Jan 18, 2007 12:10 pm

also i was thinkin HC, if you have low B12 you are probably low across the board because all the other Bs need each other to absorb. see if you can get tested for the rest of your b-complex maybe? you could see some benefit if you start crankin the rest of the complex in high doses. i think b6 is the only one you'd want to think about going to high with. but i doubt that's an issue if you're so low on the b12 deal. just thinkin out loud. take care!
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Postby Hippiechic » Thu Jan 18, 2007 10:09 pm

Thanks for the wonderful welcome, Chris!

jimmylegs,

I forgot to mention that I do drink protein shakes on days that I don't eat as much, but, yeah, you are right, I probably should eat more. I also take multi vitamins every day. I drink vitamin water as well and lots of it.

My doc didn't say if it was a deficiency or if I can't absorb it, but I didn't have any of those other tests you mentioned. I do know that my B-12 level was 40. Which they said was way low especially for somebody my age. I know my iron is normal, though.

I had a spinal tap about a year and a half ago in the emergency room and all they said was that my white blood cell count in my spinal fluid was a bit high but that they didn't know why and my neuro has never ordered a spinal tap. My neuro is not really always on top of things and I kind of have to remind him sometimes what tests we've done and what the results were before he'll look at my chart to see that I am right. I was so glad this last visit when he ordered an MRI of my back because most of my pain travels down my spine and through my leg. So I am curious to see if anything shows up on that MRI.

I will look into B complex vitamins, though. It couldn't hurt to give it a try. Thanks for the advice.

Peace and Love! :)
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b, fe, h20, csf...

Postby jimmylegs » Fri Jan 19, 2007 9:12 am

i just re-read my sentence about b-complex. it looks ambiguous in hindsight. i meant, don't let the b6 get too high. but as i said, you're not likely in danger with a b12 down at 40, omg.

be careful when they tell you things are "normal"... do you know what part of the range you're in for iron?

does your vitamin water specify any mineral content also?

sounds like you're on the right track in a lot of ways, but you want to figure out WHY the b12 was so low for sure. was it just that you didn't consume enough, or some other issue (doesn't sound at all like you didn't consume enough to me). the neuro sounds a bit wonky eh.

elevated white blood cells in the CSF... that's your IgG et al isn't it ... i had that too and it normally means there's probably, but not definitely, oligoclonal bands (which suggest inflammation of the central nervous system). but they have to wait longer for that test to come back at my hospital, so i was on tenterhooks for a couple days there til they said yep, you've got 'em. here's an abstract:

Oligoclonal bands measured in unconcentrated cerebrospinal fluid and other biochemical parameters in multiple sclerosis.Kurzepa J, Nastaj M, Mitosek-Szewczyk K, Bartosik-Psujek H, Stelmasiak Z.
Chair and Department of Neurology, Skubiszewski Medical University of Lublin.

Various biochemical parameters of cerebrospinal fluid (CSF) obtained from sixty-nine patients with RRMS (relapse-remitting MS) were compared in this study. Total protein level, white blood cells (WBC) count and presence of oligoclonal bands (OB) in CSF were examined. The presence of OB in unconcentrated CSF using an isoelectrofocusing assay on agarose gels and silver staining were measured in 72 percent of patients. The average CSF total protein level measured by Lowry assay was 269 mg/l (range from 61 to 712 mg/l). The mean level of white blood cells (WBC) was higher than in general population and it was 12 cells/microl. (jimmylegs edit: general pop 0-5 cells/microl) We found an increased level of WBC count among patients with the presence of oligoclonal bands in CSF.


http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=16146115&dopt=Abstract
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normal lab results

Postby jimmylegs » Fri Jan 19, 2007 9:15 am

one more thing about labs and "normal" results. i got a "normal" result for uric acid: 194. yep that's normal. it's also exactly the average uric acid level for ms patients. so, i don't want to be that kind of normal thanks. healthy controls: 290. optimal: that's my kind of normal!
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