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Multiple Sclerosis Message Board


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Hi MSNik & Bearygood...thanks so much for posting so fast!So sorry for the complicated post,but it's hard for me to put it all down.Okay first I'll explain the Chiari...in 1999 I had an MRI....there was NO Chiari then,but in 2006 was my next MRI and they said I had a 6mm herniation(I've been told you are usually born with Chiari?Makes NO sense to me!).The neuro I saw after the MRI in 2006 said that there was no need for surgery(the one where they do the decompression;take out part of the skull and put in a patch....)...he said he thought my symptoms were related to my low B12 level(was 222) and then he called my MD and told him to give me a monthly shot "til my level was better.Okay so I've been getting the shots,but now my MD says he wants to give me them every two months,yes he checks my level every 4 months and the last two times it was 500 which is great,but I don't feel great!The only symptoms that went away were the pins'n needles thing in my fingers/toes and the tinnitus got better,but I still have it sometimes.I was told by a different neuro that it might take a while for the B12 to help...so that is why I'm confused that I still have so many symptoms when my B12 level is good now(makes No sense to me!).I have had complete neuro exams...in 1999 when I was having weakness and focal seizures I saw two neuros(the second one was an x-cellent neuro;he is the one I'm going to be seeing again),back then he did an EMG test and it was normal amd my MRI just showed a slight bulging disc in cervical spine so I had therapy for that for 6 weeks and it was fine.During that time I was getting B12 shots from my hematologist that diagnose me with the "hidden" B12 deficiency,so my neuro said he didn't have an answer to why I was having the focal seizures(I would get an "aura":blurry spots in my vision and then see flashinglights for like 25 minutes or so)no pain,but hesaid it was probably an occular migraine.I went to an eye specialist who confirmed that as a retinol migraine.So then I finished getting B12 shots aftyer about a year and like I said I didn't get any more for 5 years(no ins.).I never really felt healthy after all of that,but I was okay.So then in Sept.'06 I started getting weakness in my arms again,so I figured my B12 was getting low.Our insuranceis really not good...the doctors in the plan are really awful to say the least.I went to the doctor constantly...MDs and neuros...my B12 WAS low(2220,but they said it was "in normal range",the MRI then showed the Chiari and they said"go see a university neuro"...so I did and here I am now...STILL having symptoms that really are disabling.I know the Chiari thing is something even neuros disagree on,but how could I not have it in 1999,but have it now?CRAZY!!!!I have a friend who had the decompression surgery and it was 12 yrs. ago and thery want her to have it again...the neuro I saw said the surgery should only be done if you have really bad constant headaches...which I do not have...I get a headache in the back of my head that is really bad,but only like once a month.Why I'm thinking I have MS is because my B12 is good now,but I still have so many symptoms.I had only a few symptoms back in 1999,but this time there are so many and every MD that I saw was SURE itwas MS,but were thrown off,because of no brain lesions on my MRI.I know I need to see the neuro and I am,but I'm scared and I just feel better having you guys to talk to about my health issues before I go in to see the dr.I will be okay somedays and then I'll do some things and get soooo disabled...like the other week I was getting some things ready to give my daughter-in-law for her yard sale and just handling so many little objects and putting price stickers on them was hard...my hands/arms got so weak...and it was hard to walk,but I do things still,because I hate just sitting around..I love to be around people and do things,but it's really hard.The main thing that bothers me is when I feel warm/hot it brings on my symptoms.Sometimes I'll have a numb leg or arm,but it only lasts for a day,but the weakness is the worst and it seems like it's chronic and the twitching is annoying...it feels like muscle fatigue.Now this year I've noticed I get bruises from itching mosquito bites....I was tested for lupus in 1999>negative and that test for a muscle disease,but that was negative also.Sometimes it looks like colors will kind of stream;like I'll look away from the tv or computer and then the color will hang on a bit?I'm just "confused" with all of this and all the women I know who are going thru peri or post menopause don't have the symptoms that I have.Also I have two people in my family with MS,but am not able to ask them about this,because they don't associate with the family at all.Thanks much again....I truly am most grateful for any advice from you guys~Scout





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