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MS and B12
I was recently Dx with MS. I also have a low B12 level. I have few symptoms of MS. (Some double vision, "sticking" of the left eye, and some drooping of the right side of my face; all are intermittant)
My MRI from 2001 had 19 leisions. (They were checking on my petuitary adnoma). The MRI from this year has 30 leisions. I wonder how much of the troubles that I am having are form the MS and how much are from the B12. My grip strenght has deminished.
Most of the time I am symptom free. I am always extremely tired.
Any thoughts?
My MRI from 2001 had 19 leisions. (They were checking on my petuitary adnoma). The MRI from this year has 30 leisions. I wonder how much of the troubles that I am having are form the MS and how much are from the B12. My grip strenght has deminished.
Most of the time I am symptom free. I am always extremely tired.
Any thoughts?
Hi Everyone,
I've had B12 problems for the past 10 years now, the first time it dropped and my level was 44, I was injections everyday for 2 weeks and then 3 monthly's. After a year the docs tested me and B12 levels were fine (which they would be aftera year of jabs) and they took me off them. I was ok for about 6 years and I started feeling ill again and recognised the symptoms, docs checked B12 and it had dropped to 81. Had a schilling test and everything was fine, so they started me on 3 monthly maintenence levels to stop it dropping again. I still dont have a reason why it keeps going low. Anyway Ive been back on them for the last few years and I'm having spells of pins and needles, electric shock pains, pain in my left eye, clumsiness, sleep problems eventhough Im exhauseted all the time and I don;t know what to think. the injectiosn arent making me feel any better at all.....has anyone else had this?
I've had B12 problems for the past 10 years now, the first time it dropped and my level was 44, I was injections everyday for 2 weeks and then 3 monthly's. After a year the docs tested me and B12 levels were fine (which they would be aftera year of jabs) and they took me off them. I was ok for about 6 years and I started feeling ill again and recognised the symptoms, docs checked B12 and it had dropped to 81. Had a schilling test and everything was fine, so they started me on 3 monthly maintenence levels to stop it dropping again. I still dont have a reason why it keeps going low. Anyway Ive been back on them for the last few years and I'm having spells of pins and needles, electric shock pains, pain in my left eye, clumsiness, sleep problems eventhough Im exhauseted all the time and I don;t know what to think. the injectiosn arent making me feel any better at all.....has anyone else had this?
Hi.. I have been Dx with R/R MS about 6 years ago.. but weird things have been happening for about 12 years now..and I just always dismissed it cos it would always go away in a couple weeks....but anyway.. they found that my B12 levels were sitting at a 207 which is ROCK bottom and they put me on 1000 mcg pills everyday.. which I have then increased to 2000 mcg a day.. and it has made a MAJOR improvment in my life.. and i think my B12 has come up to 334 in about 11 months of taking it... but I haven't had a flare up since I started taking it. it's been over a year now..... so fingers crossed!!!.. also I found this wonderful website called EARTHCLINIC.COM..... omg.. it has everything you can think of and it is all FOLK REMEDIES... a wonderful site.. also for dogs, cats, and horses...but I looked up MS on there.. and they seen to think that people with MS have a SELENIUM deficency as well.. which is a trace mineral and an amino acid.. so I'm researching that right now!!!.. I'll let you know what I find... but Please everyone goto this site.. it will be the best thing to add to your life in 09!!!... healursoul
xxx.
xxx.
I'm so sorry to hear about your problems with MS :( But, you do know that lower levels of B12 is part of the MS? I was DX last year and was so shocked by it! Hope you feel better soon:)
Hi Opie, and let me add my welcomes to everyone elses here. That is quite some story getting you to a dx. Thanks for sharing that, typos and all LOL
the good thing about around herer we really don't worry about the mistakes in our typing - we all can understand what we mean whether it is correctly spelled or not!
Be well,
Lulu
the good thing about around herer we really don't worry about the mistakes in our typing - we all can understand what we mean whether it is correctly spelled or not!
Be well,
Lulu
Sorry about the spelling! I have always been a poor speller, but it has gotten worse. One of the largest lesions is in the speach language center. It is also worse when I type...fingers don't keep up with the brain. LOL
Please forgive me
Please forgive me
Thank you for the information!! Y'all are awesome!
My b12 was 311. That is the low side of normal. My dr treats for anything under 500. I have been taking the initial once daily "load" dose. The last injection was today. I will then take one per wk for a month, followed by once monthly. I have a little more energy, and I am sleeping through the night for the first time is 2 years. The night that I took the first dose, I slept from 7pm until 9am....
Many of my symptoms: eyes, memory, mood, migraine ... are worse when I don't get enough sleep. That being said, things are better with the b12 shots!
My story is long but I will tell what I have time for tonight:
When I was a senior in college(2 months after turning 21), I cam home for christmas break. I had been having scanty monthlys for about 6 months. I spilled som coffee on my shirt while hatching a movie with my dad. When the movie was over, the stain was about 2x's the size it was before. I went to the bathroom and I had galactorhea (SP?). I had been a verry good girl...Still a V. I had an MRI at the local military base (father was retired). I was not allowed to have a copy of the lab reoprt, but they said that I had a petuitary adnoma. My prolactin level was elivated, as well as my cortisol level.
Several MRI's later and much too much money spent to dry up the milk, I could no longer tollerate the meds. The endocrinologist said that there was nothimg more that he could do. Over the years whtn the migrais get worse, or for regual checkups at the gyno, I have had repeat MRI's.
In 2001 I had another MRI at a local hospital. The report said that I had far too many leisions for a healthy 27 yr.old. The nurologist at the time said that thy were all caused from chronic migraines. After I passed out in 2002, still no known reason, I had another at the second local hospital. The lab report said the same thing. Agian treated for migrains.....UGGG
After the birth of my second son in MAY 2007, I began seeing double hen he was 30 hours old. Ne nurse said that it was low sugar LOL!! I knew better. With the beginning (to the hour) of my second menst. cycle, I had the worst migrain of the past 20 years. I had a migraine EVERY DAY for 30 DAYS! Another MRI... This was ar the second hospital. I don't have this lab report. Again treated for Migrains; thistime with TOPOMAX. I had clinically adverse reaction as someone taking 4 times my dose should have.
2008: My eye doctor was still not happy. She said that the double vision was suspicious of MS in 2007. She was angry that I was not tested then. She sent me to a new Nero. This guy was back at the first hosp. New test, 30 lesions. Potential DX on my birthday.....Sent to Colman AL.
Colman has good Dr. Worst office staff and fone recall manners of any porfessionla office that i have ever seen. I went for my visit on DEC 1st. They said that results of 1,000 bollod tests would be back in 1.5 wks. Finally on Dec 22, I got someone on the phone who gave a D___. I was finally given a DX
I am waiting to start Tx because I am elligable for a clinical trial using Rebif and a cancer drug. They are SUPOSED to call tomorrw to set up a consultation visit with the trial Drs.
Sorry that it is soooo long.....
My b12 was 311. That is the low side of normal. My dr treats for anything under 500. I have been taking the initial once daily "load" dose. The last injection was today. I will then take one per wk for a month, followed by once monthly. I have a little more energy, and I am sleeping through the night for the first time is 2 years. The night that I took the first dose, I slept from 7pm until 9am....
Many of my symptoms: eyes, memory, mood, migraine ... are worse when I don't get enough sleep. That being said, things are better with the b12 shots!
My story is long but I will tell what I have time for tonight:
When I was a senior in college(2 months after turning 21), I cam home for christmas break. I had been having scanty monthlys for about 6 months. I spilled som coffee on my shirt while hatching a movie with my dad. When the movie was over, the stain was about 2x's the size it was before. I went to the bathroom and I had galactorhea (SP?). I had been a verry good girl...Still a V. I had an MRI at the local military base (father was retired). I was not allowed to have a copy of the lab reoprt, but they said that I had a petuitary adnoma. My prolactin level was elivated, as well as my cortisol level.
Several MRI's later and much too much money spent to dry up the milk, I could no longer tollerate the meds. The endocrinologist said that there was nothimg more that he could do. Over the years whtn the migrais get worse, or for regual checkups at the gyno, I have had repeat MRI's.
In 2001 I had another MRI at a local hospital. The report said that I had far too many leisions for a healthy 27 yr.old. The nurologist at the time said that thy were all caused from chronic migraines. After I passed out in 2002, still no known reason, I had another at the second local hospital. The lab report said the same thing. Agian treated for migrains.....UGGG
After the birth of my second son in MAY 2007, I began seeing double hen he was 30 hours old. Ne nurse said that it was low sugar LOL!! I knew better. With the beginning (to the hour) of my second menst. cycle, I had the worst migrain of the past 20 years. I had a migraine EVERY DAY for 30 DAYS! Another MRI... This was ar the second hospital. I don't have this lab report. Again treated for Migrains; thistime with TOPOMAX. I had clinically adverse reaction as someone taking 4 times my dose should have.
2008: My eye doctor was still not happy. She said that the double vision was suspicious of MS in 2007. She was angry that I was not tested then. She sent me to a new Nero. This guy was back at the first hosp. New test, 30 lesions. Potential DX on my birthday.....Sent to Colman AL.
Colman has good Dr. Worst office staff and fone recall manners of any porfessionla office that i have ever seen. I went for my visit on DEC 1st. They said that results of 1,000 bollod tests would be back in 1.5 wks. Finally on Dec 22, I got someone on the phone who gave a D___. I was finally given a DX
I am waiting to start Tx because I am elligable for a clinical trial using Rebif and a cancer drug. They are SUPOSED to call tomorrw to set up a consultation visit with the trial Drs.
Sorry that it is soooo long.....
Hi opie74,
When I went to see the MS Specialist at USF they said that my B-12 was low and that it is a common finding in people with MS. Not that long ago in the US the so called normal range for B-12 was much higher than it was in other parts of the world. So my level was considered normal but now it's not...
Lesion load doesn't necessary correlate with the problems you are having and is you do a search on Google you will see that Low B-12 MIGHT cause brain lesions....
I hope you are getting the B-12 shots and like wobbly said "but it's different for different people and a Low Normal level...could be really a Low level" So if you don't notice any improvement with the shots ask to get them more often...My hands were having shooting pains in them, I just saw where it said burning of the tongue...had that to
After starting the shots those problems cleared up and my mood seemed to get better... you should also look at your diet and see if there is anything you can eat more of to help the low levels...
JJFL
When I went to see the MS Specialist at USF they said that my B-12 was low and that it is a common finding in people with MS. Not that long ago in the US the so called normal range for B-12 was much higher than it was in other parts of the world. So my level was considered normal but now it's not...
Lesion load doesn't necessary correlate with the problems you are having and is you do a search on Google you will see that Low B-12 MIGHT cause brain lesions....
I hope you are getting the B-12 shots and like wobbly said "but it's different for different people and a Low Normal level...could be really a Low level" So if you don't notice any improvement with the shots ask to get them more often...My hands were having shooting pains in them, I just saw where it said burning of the tongue...had that to
After starting the shots those problems cleared up and my mood seemed to get better... you should also look at your diet and see if there is anything you can eat more of to help the low levels...
JJFL
I'm also in the process of being dx - "Probable MS" is my label for now.
I have a B12 level of 205, which is 5 points above the cut off of 200, so my doctor put me on monthly B12 injections. This has really helped after the first couple of injections.
Do you know if your doctor did the Homeosystine and MMI or MMA (can't remember the name of the M test) along with the B12 test? It is important to have these tests done too so that they can see how significant your B12 deficiency really is. My tests were in the normal range, so we don't really know what is causing the low B12, but probably it is caused by no intrinsic factor.
What are you B12 levels if you don't mind sharing the results?
-Julie
I have a B12 level of 205, which is 5 points above the cut off of 200, so my doctor put me on monthly B12 injections. This has really helped after the first couple of injections.
Do you know if your doctor did the Homeosystine and MMI or MMA (can't remember the name of the M test) along with the B12 test? It is important to have these tests done too so that they can see how significant your B12 deficiency really is. My tests were in the normal range, so we don't really know what is causing the low B12, but probably it is caused by no intrinsic factor.
What are you B12 levels if you don't mind sharing the results?
-Julie
Hi there... I'm not yet Dx and going through more testing...have been for a couple of years.
My B12..is in the lower normal range, but my Iron level is low and not storing properly, so the MS specialist said to take Iron supplements and to take B12 shots for awhile to see if it helps with symptoms. She also said that my levels were not really low...just low normal .. but it's different for different people and a Low Normal level...could be really a Low level...so taking might help..
I've been taking them and Iron pills for a few months now.. I have noticed less cramping in my calves... abit more energy..not much though. I still get tired very quickly. My vision is not any better. and Vertigo spells are still happening...
I have about 20 lesions in my brain..not in the MS area except for a few, I also have some new ones...so the specialist wants to wait and take more MRI of my spine etc.
welcome to the forum here and let us know how things are going.
take care
wobbly
undx
My B12..is in the lower normal range, but my Iron level is low and not storing properly, so the MS specialist said to take Iron supplements and to take B12 shots for awhile to see if it helps with symptoms. She also said that my levels were not really low...just low normal .. but it's different for different people and a Low Normal level...could be really a Low level...so taking might help..
I've been taking them and Iron pills for a few months now.. I have noticed less cramping in my calves... abit more energy..not much though. I still get tired very quickly. My vision is not any better. and Vertigo spells are still happening...
I have about 20 lesions in my brain..not in the MS area except for a few, I also have some new ones...so the specialist wants to wait and take more MRI of my spine etc.
welcome to the forum here and let us know how things are going.
take care
wobbly
undx
Hi, opie, and welcome to the forum. This is a great place with wonderful people, I'm sure you will love it here.
I am undx, but have had some B12 issues also. Here are some of the symptoms of low B12:
Symptoms of severe vitamin B12 deficiency (regardless of the cause) may include burning of the tongue, fatigue, weakness, loss of appetite, intermittent constipation and diarrhea, abdominal pain, weight loss, menstrual symptoms, psychological symptoms, and nervous system problems, such as numbness and tingling in the feet and hands. Most symptoms can occur before the deficiency is severe enough to cause anemia.
I found this on, http://www.evitamins.com /healthnotes.asp? ContentID=1287007#Condition-Symptoms (take out any spaces I've added)
Here is another article about B12 as it relates to MS:
Multiple Sclerosis (MS) and vitamin B12 deficiency share common inflammatory and neurodegenerative pathophysiological characteristics. Due to similarities in the clinical presentations and MRI findings, the differential diagnosis between vitamin B12 deficiency and MS may be difficult. Additionally, low or decreased levels of vitamin B12 have been demonstrated in MS patients. Moreover, recent studies suggest that vitamin B12, in addition to its known role as a co-factor in myelin formation, has important immunomodulatory and neurotrophic effects. These observations raise the questions of possible causal relationship between the two disorders, and suggest further studies of the need to close monitoring of vitamin B12 levels as well as the potential requirement for supplementation of vitamin B12 alone or in combination with the immunotherapies for MS patients.
I found this article on: http://www.ncbi.nlm.nih. gov/pubmed/ 15896807?dopt=AbstractPlus (remember to take out the spaces)
If I remember right, it's been awhile since we discussed this, but I believe there are some others here who have been dx with MS and also have been found to have a B12 deficiency.
I hope this helps some and I look forward to getting to know you better. Again, welcome to the forum.
doni
I am undx, but have had some B12 issues also. Here are some of the symptoms of low B12:
Symptoms of severe vitamin B12 deficiency (regardless of the cause) may include burning of the tongue, fatigue, weakness, loss of appetite, intermittent constipation and diarrhea, abdominal pain, weight loss, menstrual symptoms, psychological symptoms, and nervous system problems, such as numbness and tingling in the feet and hands. Most symptoms can occur before the deficiency is severe enough to cause anemia.
I found this on, http://www.evitamins.com /healthnotes.asp? ContentID=1287007#Condition-Symptoms (take out any spaces I've added)
Here is another article about B12 as it relates to MS:
Multiple Sclerosis (MS) and vitamin B12 deficiency share common inflammatory and neurodegenerative pathophysiological characteristics. Due to similarities in the clinical presentations and MRI findings, the differential diagnosis between vitamin B12 deficiency and MS may be difficult. Additionally, low or decreased levels of vitamin B12 have been demonstrated in MS patients. Moreover, recent studies suggest that vitamin B12, in addition to its known role as a co-factor in myelin formation, has important immunomodulatory and neurotrophic effects. These observations raise the questions of possible causal relationship between the two disorders, and suggest further studies of the need to close monitoring of vitamin B12 levels as well as the potential requirement for supplementation of vitamin B12 alone or in combination with the immunotherapies for MS patients.
I found this article on: http://www.ncbi.nlm.nih. gov/pubmed/ 15896807?dopt=AbstractPlus (remember to take out the spaces)
If I remember right, it's been awhile since we discussed this, but I believe there are some others here who have been dx with MS and also have been found to have a B12 deficiency.
I hope this helps some and I look forward to getting to know you better. Again, welcome to the forum.
doni
Hi and welcome to this forum. I don't believe we have met yet. Hopefully you will get lots of information from here that will be of use. I am not a medical expert and am sadly lacking information for you about B-12. surely someone else here will come along and answer your questions from their own experience.
That's quite a load of lesions - you don't say here but are you on any DMD for your MS?
When you feel up to it I hope you will take some time to share your story with us here.
Again, welcome to the MS forum.
Be well,
Lulu
That's quite a load of lesions - you don't say here but are you on any DMD for your MS?
When you feel up to it I hope you will take some time to share your story with us here.
Again, welcome to the MS forum.
Be well,
Lulu
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