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Anyone diagnosed w/MS with clean MRI?
I'm a 32 year old female. I have almost every single symptom of MS you can have. Balance issues, fatigue, muscles spasms, bilateral arm and lower leg weakness, intolerance to heat, tripping, hand tremor, trigeminal nerve, twitches...etc. (I've also had 5 rounds of MRSA so far, my body does a poor job of fighting infections)
I saw a neurologist for the first time back in April. He listed off several different things it could be, the first being MS. He ordered an MRI/MRA w/and w/out dye. Ordered bunch of lab work too.
The things that were negative: Thyroid, Lyme, West Nile, anemia, diabetes, and MRI was negative as well. I had a VNG as well, that was negative for inner ear disorders according to my ENT doc.
Positive tests were: ANA (slightly elevated), SED (slightly elevated), and he said B-12 is low, not deficient, just low.
Currently doing B-12 injections for 6 months and then will recheck levels. After 3 injections so far I have seen no improvements in any of my symptoms.
A few weeks ago I blacked out for a few seconds and fell down my cement stairs (oh joy). Lots of scrapes and bruises. I'm guessing it was related to the low blood pressure I tend to have. I went to the doc the next day and he took my bp and it was 88/49. I know it can fluctuate from minute to minute. I try and eat as much salt as I can to keep it up.
They did an EKG and that was fine. Then neuro ordered an EEG and so far they said that I'm not having any seizures.
It is frustrating to say the least. The fatigue and the heat are absolute are so terrible. I have fallen asleep after brushing my daughters hair. It is getting harder and harder to make it through the day.
Has anyone been diagnosed with MS w/o lesions? Anyone have low B-12 and MS? How can I get my energy back?
Can they do any drug thearpy to help me even w/o any type of dianoses? How come nobody docs can give me any answers.
I also do not have any anxiety/depression disorders.
Thanks for all your help. I've enjoyed reading this website for the past year now.
I saw a neurologist for the first time back in April. He listed off several different things it could be, the first being MS. He ordered an MRI/MRA w/and w/out dye. Ordered bunch of lab work too.
The things that were negative: Thyroid, Lyme, West Nile, anemia, diabetes, and MRI was negative as well. I had a VNG as well, that was negative for inner ear disorders according to my ENT doc.
Positive tests were: ANA (slightly elevated), SED (slightly elevated), and he said B-12 is low, not deficient, just low.
Currently doing B-12 injections for 6 months and then will recheck levels. After 3 injections so far I have seen no improvements in any of my symptoms.
A few weeks ago I blacked out for a few seconds and fell down my cement stairs (oh joy). Lots of scrapes and bruises. I'm guessing it was related to the low blood pressure I tend to have. I went to the doc the next day and he took my bp and it was 88/49. I know it can fluctuate from minute to minute. I try and eat as much salt as I can to keep it up.
They did an EKG and that was fine. Then neuro ordered an EEG and so far they said that I'm not having any seizures.
It is frustrating to say the least. The fatigue and the heat are absolute are so terrible. I have fallen asleep after brushing my daughters hair. It is getting harder and harder to make it through the day.
Has anyone been diagnosed with MS w/o lesions? Anyone have low B-12 and MS? How can I get my energy back?
Can they do any drug thearpy to help me even w/o any type of dianoses? How come nobody docs can give me any answers.
I also do not have any anxiety/depression disorders.
Thanks for all your help. I've enjoyed reading this website for the past year now.
Welcome to the forum.
Wow. You certainly have a list of symptoms and the BP issue is one of concern, especially with you having fallen down stairs. You might want to consider a home BP monitor so that you have a record of your BP.
I am not one who can answer your questions in terms of dx with a clean MRI, however it appears that you should stick with it until you get a dx. It may take some time, yet with the sx you describe, you will need to be persistent with the medical community.
It is very important to keep a diary/timeline of sx.
I have found this particular forum the most helpful and active one relating to neurological issues. Keep checking back as things develop; you may just find the lead that gives the answer to your medical condition.
Wow. You certainly have a list of symptoms and the BP issue is one of concern, especially with you having fallen down stairs. You might want to consider a home BP monitor so that you have a record of your BP.
I am not one who can answer your questions in terms of dx with a clean MRI, however it appears that you should stick with it until you get a dx. It may take some time, yet with the sx you describe, you will need to be persistent with the medical community.
It is very important to keep a diary/timeline of sx.
I have found this particular forum the most helpful and active one relating to neurological issues. Keep checking back as things develop; you may just find the lead that gives the answer to your medical condition.
I got diagnosed off my symptoms and the abnormal readings of my evoked potentionals tests. Had an mri done without contrast that came out clean (my regular doctor thought it was a neck issue) before I saw my neoro. He said an abnormal VEP was the most accurate test for determining if it is MS.
hey and welcome!
i am no expert, i have just joined myself and too remain undiagnosed...but from what i've read it does seem like it can take years and years before doc's deem a diagnosis worthy to make.
not sure how long you've been working with your current neuro, and they do sound rather thorough, but is there any possibility of being referred on? perhaps to a learning hospital or university setting? often times they see more obscure cases and perhaps their expertise would be able to help you determine what is happening.
best of luck, it certainly isn't fun not knowing.
xo michelle
i am no expert, i have just joined myself and too remain undiagnosed...but from what i've read it does seem like it can take years and years before doc's deem a diagnosis worthy to make.
not sure how long you've been working with your current neuro, and they do sound rather thorough, but is there any possibility of being referred on? perhaps to a learning hospital or university setting? often times they see more obscure cases and perhaps their expertise would be able to help you determine what is happening.
best of luck, it certainly isn't fun not knowing.
xo michelle
Thanks for the answers everyone. Audrey: I have been keeping a journal/list of symtoms and what not. I plan on faxing it to my neuro sometime this week.
Coach: I'm glad your doctors were able to give you an answer. That must be somewhat of a relief. I haven't had a VEP yet, maybe that's next on the list. I think I've been going through the 'ruling out' phase. Anybody else 'hope' that something...ANYTHING comes back abnormal simply so you'll have an answer. It's not like I want something to be wrong with me, it's just that I would love an answer.
Michelle: I'm glad you found this site too. It's nice to have others who understand. I've been having different symptoms for the past 4-5 years. Little things here and there. I always have just come up with some excuse...work too hard, not enough sleep, whatever seemed to fit. I finally saw a neuro in April and have a f/u appt on the 31st of Aug. I hope to get some answers but understand that he may not have any. The first time I saw him he told me several times that he'll figure this out, that'll he give me an answer. He is a great doc. My pcp has suggested Mayo clinic a couple of times. We're going to wait to see what the neuro says and take it from there.
The waiting game continues =)
Coach: I'm glad your doctors were able to give you an answer. That must be somewhat of a relief. I haven't had a VEP yet, maybe that's next on the list. I think I've been going through the 'ruling out' phase. Anybody else 'hope' that something...ANYTHING comes back abnormal simply so you'll have an answer. It's not like I want something to be wrong with me, it's just that I would love an answer.
Michelle: I'm glad you found this site too. It's nice to have others who understand. I've been having different symptoms for the past 4-5 years. Little things here and there. I always have just come up with some excuse...work too hard, not enough sleep, whatever seemed to fit. I finally saw a neuro in April and have a f/u appt on the 31st of Aug. I hope to get some answers but understand that he may not have any. The first time I saw him he told me several times that he'll figure this out, that'll he give me an answer. He is a great doc. My pcp has suggested Mayo clinic a couple of times. We're going to wait to see what the neuro says and take it from there.
The waiting game continues =)
regarding the Mayo clinic....I would research this site with insight from other members. In the short time I have been on here there seems to be a backlash angainst the Mayo..
http://www.medhelp.org/posts/Multiple-Sclerosis/Hold-the-Mayo/show/931895
http://www.medhelp.org/posts/Multiple-Sclerosis/Hold-the-Mayo/show/931895
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