Hello all, I have read so many of these pages and the info has been great. I have not been DX with anything other than intermittent paresthesia but there is suspicion for MS because of the intermittent paresthesia. Below is my history.

I am 34 female otherwise healthy Mom and wife.
I got Strep with a fever that I could not bring down and ended up in the ER in May 08. Two weeks later my neuro symptoms started. I felt very weak and legs were sore like I had the flu, went to Dr and blood work showed viral infection. Dr said it was a remaining virus I will get over it. My knee (skin only) had a mild burning sensation (like very mild sunburn) without any reason which would last 10 - 15 secs on and off throughout the day. I got very dizzy and lightheaded for a few days and went back to Dr. He did blood work and said everything was back to normal, still must be effects of virus. I felt horrible, NO energy, no appetite, lightheaded, and sick. This went on for several weeks and new neuro symptoms started showing up; I couldn't perform my job. I was referred to neurologist and passed neuro exam, EMG, and MRI of brain cervical spine was normal (with and w/o contrast). Neurologist said I think it is a virus, give it time and it will go away. From May to July my neuro symptoms increased to my forearm feeling like there was a band slightly constricting it; my temple tingling; the feeling of "chills" with no visual skin changes, and isolated to a small area like the top of one thigh; it moves all over my body on different days. My toe at the tip feels less sensitive, like a band-aid is covering it. Then it spread to most of the toe and into the next one. All of these feelings would only last seconds to a few minutes at the most, but they would come and go throughout the day. Some days would be good (very little symptoms) and the very next day would be "sick" again. My family Dr and Neuro looked for MS b/c of paresthesia but Neuro said that my symptoms did not match MS that she had seen and all my tests were normal. I stopped Zantac and everything I was taking in fear b/c I didn't know what my problem was and I wanted to see if I could get better. I did, almost all symptoms went away (all but temple tingling very rarely)by Aug and everyone thought they would never come back. I started the Zantac again in Sep (very bad ulcer and reflux) and got a flu shot in Oct. Two days later the "chills" feeling came back and over the next few weeks, so did the others. I was soo depressed and afraid, anxious ALL the time. Neuro does not know why they came back and has ordered another MRI and has offered to refer me to another Neuro for a spinal tap if I want. I had my Dr. order B12 serum. It was 283 with a note from lab stating 10% of patients have neurological symptoms with level below 400. Neuro said can have problems with level below 500! I started the cyano b12 shots 1ml every day for 7 days, then 1 per week for 4 weeks, then 1 per month. My symptoms are better but am I taking the wrong one? I stopped Zantac after reading it can cause b12 deficiency.
I am afraid of MS and I am trying not to put all my eggs into B12 being the case but with the weird intermittent paresthesia I can’t figure out any other reason, and neither can my Drs. I don’t want the spinal tap until last resort. If my MRI comes back normal tomorrow what should I ask my Dr to do next? My neuro is very nice and wants to help but she said after seeing her since June,” in my heart of hearts I don’t believe that you have MS, I think it may be a virus and sometimes we can’t find a reason for everything.” .

Have any of you ever heard of a virus lasting this long and presenting neuro symptoms? I don’t have any pain and I have not fallen or had any vision problems. Neuro said my symptoms are peripheral and have to do w/sensory.

During all this, for about 5 days my knee (area about two inches on skin) felt like a cold breeze was blowing on it? When I have the numbness sensations I check to see if it is really numb and it is NOT. I feel everything just slightly less during the “spells.” Dr said in MS symptoms have to last for 24hrs to be considered a flare up, do mine count b/c they only last a few seconds but are coming and going through the day. They also change from day to day; my finger can feel numb for a few days then feel normal a few days, then back to numbness again. (when I say numb it is not really completely numb, just less sensitive.)

I also went to ENT and had many tests done for vertigo, again everything normal. Dr said I could be hypoglycemic when I feel light-headed and eating does make me feel better, but not 100%.

Is it possible that all of my problems could be due to overuse of PPI and low Vit b12? I don’t eat meat that much and my diet is not very healthy, but that is changing! Does this sound like early MS that anyone else has experienced? I have had blood drawn for everything many times over 6 months, diabetes, lupus, RA, only things off are B12 and Vitamin D.

I was a normal person before all this, now I worry ALL the TIME! After reading so much on the internet I am scared that I will wake up one day w/o vision or feel paralyzed, or that the “symptoms” won’t go away. I know that some people get diagnosed with MS when they don’t really have it, so I am afraid to go to a new Dr and they just diagnose me b/c of my paresthesia and no lesion on MRI. My second MRI that is tomorrow will be 6 months from my last. If it is normal does that lessen my chances even more of not having MS and point more to Vit deficiency?

What is wrong with cyano shots? Should I take something in between the shots? I have finished the 7 day course and now have to wait a week for my next one. I feel like I am on motorcycle w/o a helmet. There was comfort in getting the shots, like was doing something that might heal my many problems.

How long should I give the B12 before I end up with the spinal?


Sorry for such a long and convoluted post! Thanks for any help or similar experiences!

If they work for you. You should see improvements in blood levels from them. But not all people do. Cyano is a synthetic product and some people cannot convert it well to active methyl form. Hence many here skip the shots and use methylcobalamin orally instead, daily.

You can try 5mg a day for a couple of months --take on an empty stomach-- and compare how you feel with the injections.

there are various options here--most stores do not sell this locally--
http://www.iherb.com/Search.aspx?kw=methylcobalamin

Just swallow them, as I don't think the under the tongue business really works.

Also if you get a fasting INSULIN test, you will see if you are becoming insulin resistant. An elevated level means your blood sugars are not being absorbed well into the cells...hence the strange feelings, paresthesias. This test can be more predictive than fasting glucose. If your fasting insulin is elevated, then you need to begin supplements that improve insulin activity and change your diet somewhat.

B12, magnesium, and Vit D are typically common deficiencies in this country. Take care of those 3 and see how you feel then. Acid lowering drugs not only affect B12 absorption.
They also reduce calcium, magnesium, zinc, B12, folate and iron. Those are the only ones proven so far, but other things may be affected as well.

People who malabsorb nutrients may have gluten intolerance. Some people with MS type symptoms have been on the boards, and have improved with going gluten free. Our Gluten board here has many references in the stickeys...places to go to learn about the testing, and neurological symptoms that may point to gluten intolerance. Chronic GERD also may signal this problem. Your need for acid reducing drugs is problematic and may be a sign of it.

that's the first i heard of that, I'll try that from now on. see if it increases the effectiveness.

This may be off subject, but some days I get stressed and hey I feel like I'm withering away, or the world is opening up and swallowing me. I get these feelings too though, weird tingly sensations, almost feel like your body is atrophying sometimes with accompanying headache. (not discounting your problems and am not saying they aren't actually neurologically related or disease related.) Now, these feelings may or may not be neurologically related, but many people may relate to this. Just maybe have to slow down, relax, and rest sometimes cuz I always feel like the world is always one step ahead of me. It's like the world is a neverending stream of energy, and I faulter because I'm not going with the flow, I'm always slow and never quick witted. It's funny cause I feel like I'm getting old somedays even though I'm like 25. . Whenever I get excited, the excitement never lasts, there's always someone out there to squash it, it seems. maybe tomorrow will be better I say. I never barely have stimulating conversation with people, and I always blame it on myself or my way of communicating heck maybe sometimes I'm too intense and just hafta calm down.

Thanks for the response MrsD. Are there shots of Methyl that work better than oral? I like the idea of instant w/the shots, my Dr says if you are intolerant b/c of gastric problems then shot is the way to go. What blood test should I have Dr order? I already had Vit d,b12,folate,homeocystine, potassium, calcium, sodium, (normal cbc and metabolic panel.)

They monitor the D and it is slowly coming up, but I just started on b12 10 days ago. Also, I have twitches in weird areas of my body. Like above my lip, or side of my palm. They are intermittent through the day but will usually last 3-4 days then go away. What vit deficiency is this? I heard that I need potassium, but blood level were fine.

Thanks!

is available by injection thru a compounding pharmacy.

Oral is just as good. There are studies comparing oral vs injection and the same results are had from both.

Injections only last 72 hours. Oral provides the B12 every day.
Your doctor is wrong...one does not need the stomach at all for high dose oral to work. B12 is passively absorbed in the small intestine without intrinsic factor. (it must be taken on an empty stomach however.).

http://www.aafp.org/afp/20030301/979.html
for you to read and for your doctor.

Methyl has become the main form preferred and is very inexpensive. (doctors don't know about this either because their textbooks have not been rewritten). For 30 cents a day you could have a non-invasive way of getting what you need.

I'd recommend you do 5mg a day for the 120 days, and get retested. This is an example:
http://www.iherb.com/ProductDetails.aspx?pid=117&at=0
take on empty stomach with no food for 2 hrs after. Presence of food and fiber reduces absorption.

Twitching has many causes. Imbalance of calcium to magnesium (not enough magnesium) or low blood sugars.
Low blood sugars are a common cause of muscle twitches.
This can be a sign of insulin resistance. In fact it is the first sign. A fasting insulin level will tell you if this is the case for you.

I'd suggest you read my magnesium thread. Taking 1/2 of the RDA as a supplement can help many neuromuscular twitching and cramping symptoms. Excess of calcium in the diet with a low intake of magnesium often causes problems like you describe.

Have you had a test for Helicobacter Pylori? It is a bacteria that causes ulcers. I had it and only had acid reflux and heartburn. I understand some people don't even have symptoms, yet carry the bug. It is also contageous, usually within the family drinking after eachother, etc....
Anyway, if you do have it you might be cured and not have to use zantac anymore. That could cure one of your problems anyway.

I have to chime in and say that I had some similar symptoms to you in the beginning of my health journey.

Both B12 and Vit D were low and I treated them and felt better but not good enough.

Then I also discovered that I was very iron deficient. I mention this because like B12, Iron is a large molecule and hard to absorb. I feel even better when I supplement with all 3 B12, Vit D and Iron.

IF you are iron deficient one of the symptoms does include parathesias.

Be sure to ask your doc for a bllod test of iron serum, TIBC and ferritin.

If you are iron deficient the best thing I have found is the once a day prescription Repliva. Much less stomach upet.

Keep us posted.