Aa
Help, this is taking over my life!
Hi, I'm new here but I just wanted to ask about the things I'm experiencing. I went to the urgent care about 3 weeks ago because I had a little spot on my lower left abdomen (really far out, near the hip) that felt funny. I thought of it as numb, but now I cant say for sure. The Dr. there was not exactly gentle and said "could be nothing, could be MS" Well, that threw me into a fit of panic as I am the anxiety type anyway. So, he ran some tests and found that my B12 was quite low (163) and told me to take a multi for six weeks and come back for a retest. That way, if it was still lower, he would know if I had pernicious anemia. So, I wanted a second opinion because I thought I needed B12 more quickly. The second doc was not concerned about it being MS and gave me a B12 shot. Then I went to my naturopath who told me she thought it could be a spinal stenosis because by that time I had realized that it usually only happened when I bent my head forward but it didn't feel like a shock or anything, just a dead feeling. She gave me one more shot of B12 and told me to wait and see while taking some sublingual methyl B12. A few days after that, I noticed there was another little spot that was just like the first one, but smaller only this time in my genital area. I panicked! Then, the next day I was meeting with someone and I had some wave come over me where I felt terribly achy and cold and then my arm and hand went numb on my right side. Then I came home, and the same thing happened to both of my legs from the shins down. I called my naturopath and she said to take my temp to make sure I wasn't getting a virus and to check my anxiety level because based on how much anxiety, lack of sleep, and lack of appetite I had had, she said I could be having a severe panic attack. I laid down and in the morning, I felt fine except for the original spot which had gained a cohort in my groin. I have since noticed that there is a little spot on the back of my left leg now too that joins in when the other two get that feeling. Anyway, I am trying to get in with a decent doctor and not having a very easy go of it. I haven't had many other symptoms except sometimes one of my limbs might feel hot or tingly. Does this sound like it could all be because I was so low in B12? 2 of the doctors I saw told me that the nerves take a considerable amount of time to heal and that it could be a while before improving. How long? And could it get worse before getting better even though I'm supplementing? I have convinced myself it's MS and now I'm not sure what is real and what is not except for the sensation that started it all. My eye was wierd for a day or two during acute paranoia, but I've been symptom checking non stop and my eye is fine now. HELP!
I 'm sorry I can't give you the info you want. I just don't know the usual healing time other than it can be many months. Your blood levels of B12 will be normal long before the nerves finish whatever healing they can do. The L'Hermitte's Sign (it actually a symptom, not a sign, but it is firmly misnamed) can be quite varied. It is a reproducible sensation in the limbs or torso that occurs when you flex your neck.
The sensation is caused by the pressure of a spinal lesion when the spinal cord in bent with the neck. If it only happens when you flex your neck, then it is consistent with LS. If the lesion in the spine enlarged, or if another appeared, the sensation from flexing your neck could appear to spread or change. Remember that L'Hermittes is just another word for the sensation of damaged nerves from whatever reason (nerves that run in the spinal cord). If the problem is just one of damage to the myelin sheath insulating the nerves, then this, too could heal with B12 if that is the cause. If there is actual damage to the nerve fiber itself in the spinal, then it may not heal or healing may be incomplete.
I wish I could be more definite, but I just don't know.
Quix
The sensation is caused by the pressure of a spinal lesion when the spinal cord in bent with the neck. If it only happens when you flex your neck, then it is consistent with LS. If the lesion in the spine enlarged, or if another appeared, the sensation from flexing your neck could appear to spread or change. Remember that L'Hermittes is just another word for the sensation of damaged nerves from whatever reason (nerves that run in the spinal cord). If the problem is just one of damage to the myelin sheath insulating the nerves, then this, too could heal with B12 if that is the cause. If there is actual damage to the nerve fiber itself in the spinal, then it may not heal or healing may be incomplete.
I wish I could be more definite, but I just don't know.
Quix
Also, could the feeling be L'Hermitte's Sign? (It only happens when I flex my head) Although I do understand that that can happen in B12 deficiency, could it also spread down slowly the way it has? At first, I didn't think it was LS, but now I'm beginning to wonder if that is what the sensation is. Could IT also worsen or seem to worsen as the nerves heal too?
So, you think perhaps there was nerve damage that I was not feeling yet that is now causing some issues during the healing process? How long does it take? I feel like I'm going insane if it doesn't stop coming at me soon! Yes, I agree that I was mislead by veg sites about B12 and I was a victim of that. I actually ate some chicken last night for the first time in forever. So how long do nerves take to heal? At what point do I start to feel like this is truly worsening instead of just healing? Thank you so much for helping me to possibly sleep tonight.
Yes, any action of a nerve can be affected. Most often it is sensory nerves, but the sensory nerves include touch, pressure, pain, temperature, position and vibration. So you can imagine that the range of abnormal sensations is vast.
It really isn't the "damage" that is worsening, just the sensations. Think of it like this. A damaged nerve can send out one of two wrong messages. It can scream that it is being stimulated when it isn't, like sending a pain signal when there is nothing wrong to cause pain. Or it can fail to send a signal when it should. It will just be silent. In this case you may feel numbness or the wrong temperature when you should feel something normal.
As the nerve heals, the damaged, quiet nerves will start sending signals, but the signal is not healthy and may be "wrong" (tingly instead of touch, pain instead of pressure, high pain instead of mild discomfort.) To the patient this will seem like a worsening, but it is really just a nerve, starting to heal, "wake up", but doesn't really have it's act together yet.
Yes, despite the protests of vegan groups that they are not more likely to suffer some deficiencies, it really does happen. In your case it is probably low intake, so I would hope that the sublingual B12 would be just fine, in addition to the shots you got in the beginning.
Does this make sense?
Quix
It really isn't the "damage" that is worsening, just the sensations. Think of it like this. A damaged nerve can send out one of two wrong messages. It can scream that it is being stimulated when it isn't, like sending a pain signal when there is nothing wrong to cause pain. Or it can fail to send a signal when it should. It will just be silent. In this case you may feel numbness or the wrong temperature when you should feel something normal.
As the nerve heals, the damaged, quiet nerves will start sending signals, but the signal is not healthy and may be "wrong" (tingly instead of touch, pain instead of pressure, high pain instead of mild discomfort.) To the patient this will seem like a worsening, but it is really just a nerve, starting to heal, "wake up", but doesn't really have it's act together yet.
Yes, despite the protests of vegan groups that they are not more likely to suffer some deficiencies, it really does happen. In your case it is probably low intake, so I would hope that the sublingual B12 would be just fine, in addition to the shots you got in the beginning.
Does this make sense?
Quix
Thanks Quix! So would it be normal for the symptoms to continue to worsen before getting better? I have actually been a vegetarian for almost 13 years and was mostly vegan for about 6 or 7 of that. Sometimes my arm or leg will just feel extremely hot for no reason. Could this also be a B12 thing? I am taking the sublingual methyl B12 now and have been for a week and it seems like things are getting worse. Is it possible for the damage to get worse before getting better? Thanks!
Hi, there, you are getting some good words of advice and support here. You need to know that a low B12 is a major cause of neuropathy, which is what you are describing on your hip, groin and leg. B12 deficiency is far more common than MS and cause mimic the abnormal sensations and even casue lesions in the brain. It is vital that they determine if you do have pernicious anemia and, if you do, that you be treated with regular injections.
Oral B12 supplements will not cure the problem if the problems is a true inability to absorb the vitamin out of the stomach. If the problem is a diet deficient in B12 then the sublingual methyl B12 is the preferred treatment.
B12 is absorbed best in the presence of stomach acid, so if you take antiacids or meds like Prilosec, Nexium, Zantac, Pepcid, etc for an extended period of time then your deficiency could be on the basis of failure to absorb.
Yes, the healing of the nerve damage from B12 deficiency can take many months. Long before you start thinking about MS, get the B12 thing evaluated and treated!! It will save you a lot of bad nights.
Quix, MD
Oral B12 supplements will not cure the problem if the problems is a true inability to absorb the vitamin out of the stomach. If the problem is a diet deficient in B12 then the sublingual methyl B12 is the preferred treatment.
B12 is absorbed best in the presence of stomach acid, so if you take antiacids or meds like Prilosec, Nexium, Zantac, Pepcid, etc for an extended period of time then your deficiency could be on the basis of failure to absorb.
Yes, the healing of the nerve damage from B12 deficiency can take many months. Long before you start thinking about MS, get the B12 thing evaluated and treated!! It will save you a lot of bad nights.
Quix, MD
Thank you for your kind words! I am trying to just be restful, but it is a constant chore. I am really tired of this. Today I skipped my green tea so that perhaps I would get better sleep tonight and not wake up in a panic. I read someone's post somewhere in this forum that said that their B12 issues actually got worse before they got better after starting treatment, and that it took over 5 months to go away...is that possible? Could it just be B12?
Super advice.....
BananaD....you are in a great place, where you can see that people really do care...
Heather
BananaD....you are in a great place, where you can see that people really do care...
Heather
Great advice you got from Kathy. I forgot to tell you where you could search for a Neuro in your area. Thank you Kathy for your help. Big Hugs...
Heather
Heather
Hi! So glad to have you to this forum. Please, do not think that we are not taking you seriously. However, I also agree with Heather. It can be so scary and frustrating at times. But, do not panic. Just try to enjoy yourself, especially with the holidays coming, and try not to worry.
I have heard of people with low B-12 having symptoms similar to some of yours. And nerve damage can take quite a while to heal. I had some surgery to correct a broken bone and nerve damage and it took up to three years for those nerves to heal. I would not expect yours to take anywhere near that long but I am not a doctor and I am unfamiliar with your medical condition.
I would make a journal of your symptoms and your medications and what effect they seem to have on you. It is usually best to do it like a simple timeline. You can also include any emotional stressors, food intake, exercise, or changes in your lifestyle that might affect some aspect of your health. You can start from summating the symptoms and other information you noted above or anywhere that you think appropriate. Try to keep it simple. Then, when you go to the doctor he/she can quickly look it over to ascertain any possibly important trends/correlations or at least get an overview before examining you. This can help so much to make effective use of your appointment time and also confidence wise. And the doctor knows that you were well-prepared and are seeking answers. Also, it helps to have it to refer to, otherwise, in case you forget.
Good luck! Try to enjoy life and keep us posted, okay? People are always here for each other. Again, welcome to the forum!!!
I have heard of people with low B-12 having symptoms similar to some of yours. And nerve damage can take quite a while to heal. I had some surgery to correct a broken bone and nerve damage and it took up to three years for those nerves to heal. I would not expect yours to take anywhere near that long but I am not a doctor and I am unfamiliar with your medical condition.
I would make a journal of your symptoms and your medications and what effect they seem to have on you. It is usually best to do it like a simple timeline. You can also include any emotional stressors, food intake, exercise, or changes in your lifestyle that might affect some aspect of your health. You can start from summating the symptoms and other information you noted above or anywhere that you think appropriate. Try to keep it simple. Then, when you go to the doctor he/she can quickly look it over to ascertain any possibly important trends/correlations or at least get an overview before examining you. This can help so much to make effective use of your appointment time and also confidence wise. And the doctor knows that you were well-prepared and are seeking answers. Also, it helps to have it to refer to, otherwise, in case you forget.
Good luck! Try to enjoy life and keep us posted, okay? People are always here for each other. Again, welcome to the forum!!!
I agree with Heather you don't need to have that kind of panic without have a neuro look at you if he or she thinks that something may be wrong other than low B12 he will order a MRI.
If there is one thing I have learned in my life since hearing the words "It could be MS" is live life day to day and try not to analize yourself. It only makes things worse.
You can go online and do a search for a neuro in your area or if you really think it may be MS you can call the National MS society at :1-800-269-9055
They have lists of Neuros that they recommend. They are very helpful and knowledgeable.
Good luck to you and welcome to our forum.
Kathy
If there is one thing I have learned in my life since hearing the words "It could be MS" is live life day to day and try not to analize yourself. It only makes things worse.
You can go online and do a search for a neuro in your area or if you really think it may be MS you can call the National MS society at :1-800-269-9055
They have lists of Neuros that they recommend. They are very helpful and knowledgeable.
Good luck to you and welcome to our forum.
Kathy
Please do not convince yourself that you have MS. That will drive you crazy.
You definitely need a full evaluation by a competent Neurologist. Most of all you need to relax, until the doctor tells you that you have something to worry about.
Your symptoms can be signs of so many things. Why the first doctor immediately said MS, is beyond me. I call that very out of the ordinary.
Again, get an appointment with a Neuro and let me welcome you to the forum. We are glad to have you here.
Heather
You definitely need a full evaluation by a competent Neurologist. Most of all you need to relax, until the doctor tells you that you have something to worry about.
Your symptoms can be signs of so many things. Why the first doctor immediately said MS, is beyond me. I call that very out of the ordinary.
Again, get an appointment with a Neuro and let me welcome you to the forum. We are glad to have you here.
Heather
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