oceangirl19
08-24-2007, 02:00 PM
I'm the newby with many many questions! (Sorry!) This board
has helped me with sooo many of my questions and I'll be forever
greatful!
Here's another: My neuro specializes in MS and I really like her (although
she's hard to get a hold of sometimes). My first visit she made me get
TONS of blood work done. Within that my serum B12 level came back
extremely low, to the point of me having injections along with my steroid
treatment last week for replacement therapy. When I asked her if all my
symptoms could be caused by the B12, she said that a decrease in B12
levels and MS have recently been shown to co-exist in many cases.
And due to the fact that this all started with optic neuritis (twice), it's probably definetly MS (although we're still working on this for sure..argh..)....
I was wondering if anyone else on this board had both? Or at least heard
of this link before (b12-ms)?
Thanks,
Rachel
has helped me with sooo many of my questions and I'll be forever
greatful!
Here's another: My neuro specializes in MS and I really like her (although
she's hard to get a hold of sometimes). My first visit she made me get
TONS of blood work done. Within that my serum B12 level came back
extremely low, to the point of me having injections along with my steroid
treatment last week for replacement therapy. When I asked her if all my
symptoms could be caused by the B12, she said that a decrease in B12
levels and MS have recently been shown to co-exist in many cases.
And due to the fact that this all started with optic neuritis (twice), it's probably definetly MS (although we're still working on this for sure..argh..)....
I was wondering if anyone else on this board had both? Or at least heard
of this link before (b12-ms)?
Thanks,
Rachel
Sponsor
oceangirl19
08-24-2007, 02:03 PM
oops - sorry guys, I should read the whole board before I ask questions. Meaning, I should have posted this question on the message string about B12....I'm not thinking straight these days:(
Rachel
Rachel
MSNik
08-24-2007, 02:57 PM
Hi Rachel. Sounds like you have a very thorough doctor. Yes, you can have low B12 and MS at the same time, although it doesnt always happen. Low b-12 doesnt cause MS, nor the other way around, there just seems to be some link.
Ask your doctor about taking B12 supplements orally...as in a pilll for the future...if you wind up having MS, youre going to be doing enough shots! ;)
Nikki
Ask your doctor about taking B12 supplements orally...as in a pilll for the future...if you wind up having MS, youre going to be doing enough shots! ;)
Nikki
JaysWife80
08-26-2007, 01:18 AM
Hey..I also have a Dx of MS AND B-12 def. I had no idea they could co-exist thought they were 2 completely different things. Interesting. Thanks for the info.
ezee
08-27-2007, 05:02 AM
Oceangirl,
I am glad you posted here on this subject, and I don't understand why it would be inappropriate, since it is a question about MS and Pernicious Anemia.
I have already gotten a PA dx, and suspect that I have MS. I have had all the optical neuritis, cognitive, memory, gait, pain, spams, falls, and many other MS related symptoms. The problem is that MS and PA symptoms are very similar, so I don't know how they are not related, or the same, outside the B12 thing.
As for shots of B12 vs. the pills, I have heard that the pills are ill-advised because poor intestinal absorption is the problem to begin with, and putting 1000 mcg pills down only passes 1000 mcg through your system, and may not collect any more of it. The injections apparently avoid the issue of absorption. I have been on the pills for months since my dx, and only because getting to my Dr. was an issue because I couldn't drive for almost 3 months.
Where is the Pernicious Anemia board?? I'm new here too, and would like to plug in to that discussion group.
Maybe I'll drive up to Davis to your Dr. :) I need a good Neuro. Mine doesn't even want to do a Spinal Tap until 6 months of the B12 passes. Since my MRI's were absent any plaque, I feel like it's the next step, and so say several members of my family that are not Neuro's, but Surgeons, and Radiologists.
Good luck with yours, I would really like to know what you find out.
I am glad you posted here on this subject, and I don't understand why it would be inappropriate, since it is a question about MS and Pernicious Anemia.
I have already gotten a PA dx, and suspect that I have MS. I have had all the optical neuritis, cognitive, memory, gait, pain, spams, falls, and many other MS related symptoms. The problem is that MS and PA symptoms are very similar, so I don't know how they are not related, or the same, outside the B12 thing.
As for shots of B12 vs. the pills, I have heard that the pills are ill-advised because poor intestinal absorption is the problem to begin with, and putting 1000 mcg pills down only passes 1000 mcg through your system, and may not collect any more of it. The injections apparently avoid the issue of absorption. I have been on the pills for months since my dx, and only because getting to my Dr. was an issue because I couldn't drive for almost 3 months.
Where is the Pernicious Anemia board?? I'm new here too, and would like to plug in to that discussion group.
Maybe I'll drive up to Davis to your Dr. :) I need a good Neuro. Mine doesn't even want to do a Spinal Tap until 6 months of the B12 passes. Since my MRI's were absent any plaque, I feel like it's the next step, and so say several members of my family that are not Neuro's, but Surgeons, and Radiologists.
Good luck with yours, I would really like to know what you find out.
oceangirl19
08-27-2007, 03:47 PM
Hi Ezee,
Yeah, I actually just moved to Bodega Bay now, but started with docs at the UCD medical group and just make the drive ALOT!!!:) I have friends in Davis, so I stay there. There are two good neurologists Apperson and Ajuce (sp?) at UCDMG that specialize on MS related stuff. Everyone I've talked with keeps telling me to stick with them even though they are hard to get a hold of and
semi-far away. They both do clinical/patient stuff and I know at least Apperson is involved in some research studies.
She's very good at covering all the bases and she's already told me even if she doesn't find lesions/positive spinal tap stuff she wants me to start treatment for MS anyways because of the ON.
However, getting an appointment takes a long time and once your there usually your appointment is late. On a brighter note that's because they appointments with them last forever if need be, they do not rush at all - I've never so thoroughly looked at MRI pictures before:).
As of right now, I'm essentially attempting to not stress out and waiting for my appointment with the neuro on the 11 of Sept. I've had optic neuritis twice, which decided to not go away the second time, therefore I'm stuck right now with pain with eye movement:( and I think it may be starting in my right eye - ugh. Two weeks ago I had numbness, tingling in my left foot/leg, left arm/hand, and right throat. After 5 days of steroids and 6 days of b12 shots everything mostly went away except the ON and some neck/throat pain.
I have to get a spinal tap next week:( and hopefully I'll get some answers soon and keep you updated. I'm around SF a bunch if you ever want to get together to commiserate:). All this stuff is scary and stressful!
Rachel
Yeah, I actually just moved to Bodega Bay now, but started with docs at the UCD medical group and just make the drive ALOT!!!:) I have friends in Davis, so I stay there. There are two good neurologists Apperson and Ajuce (sp?) at UCDMG that specialize on MS related stuff. Everyone I've talked with keeps telling me to stick with them even though they are hard to get a hold of and
semi-far away. They both do clinical/patient stuff and I know at least Apperson is involved in some research studies.
She's very good at covering all the bases and she's already told me even if she doesn't find lesions/positive spinal tap stuff she wants me to start treatment for MS anyways because of the ON.
However, getting an appointment takes a long time and once your there usually your appointment is late. On a brighter note that's because they appointments with them last forever if need be, they do not rush at all - I've never so thoroughly looked at MRI pictures before:).
As of right now, I'm essentially attempting to not stress out and waiting for my appointment with the neuro on the 11 of Sept. I've had optic neuritis twice, which decided to not go away the second time, therefore I'm stuck right now with pain with eye movement:( and I think it may be starting in my right eye - ugh. Two weeks ago I had numbness, tingling in my left foot/leg, left arm/hand, and right throat. After 5 days of steroids and 6 days of b12 shots everything mostly went away except the ON and some neck/throat pain.
I have to get a spinal tap next week:( and hopefully I'll get some answers soon and keep you updated. I'm around SF a bunch if you ever want to get together to commiserate:). All this stuff is scary and stressful!
Rachel