[ru2l8]

Hello everyone,
I posted in MS and Vitamin boards in December and have hopefully, finally received a diagnosis. New neuro says mild case of SENSORY Guillian Barre. Here is my story.

May 08 got a nasty virus with fever and went to ER. I was very dehydrated and had to get 2 IVs with meds for stomach problems and diarrhea. I got better but two weeks later thought I was having a relapse, sore muscles and joints with muscle cramping too. Went to PCP and had a CBC which came back high WBC but it was going down from original illness and he said don't worry just effects from virus. Well, it got worse dizziness and weak legs, felt like I was drunk and sick all in one! Go back to PCP and tell him symptoms and tingling in my knee has started. He refers me to Neuro and she thinks maybe MS. She orders bloodwork for Lupus and others and all are normal, including CBC. SHe sends me to Rheumy and this Dr says maybe MS, go back to Neuro. So I go back to Neuro and she orders MRI of brain and neck and EMG and NCS, ALL NORMAL. Neuro says post viral and it will go away try not to worry and forget that your whole body is tingling, feeling numb, dizzy, lightheaded, anxious and depressed. So I was a good girl and believed her. It was about two months from beginning that my symptoms peaked and I was really sick. I had to go and stay with my Mother b/c I felt so terrible, and I was scared that something bad like paralysis or a seizure was going to happen. I quit all meds including stomach ones right before the "peak." Beginning of third month things were slowly getting better and I started to belive I would be OK. At the end of 4th month It was gone, and neuro said it will never come back you are healed.
For Sept and Oct I was good, then I got a flu shot. Three days later some tingling in my thigh but it went away. Within a month everything was back and so was I at the Neuro. She ordered another MRI of brain, neck, and this time spine. She also repeated the EMG, all were normal again. She said I am stumped, I don't think you have MS but I cannot say for sure. Crap, I was sooo scared and I thought for sure that it was MS and it was just not showing up on MRI yet. I found this site and learned about b12. I had her order it and it came back at 283. I started cyano shots 1 per 7 days and 1 per week for 4 weeks. I used this dosage from what I learned on internet, not what was prescribed so I ran out. I am supposed to continue 1 per month for life.. So I start hoping that this is all b/c low b12 from years of zantac and the protonix. I fet a lot better after the 5th shot but when I had to go to the week schedule I did not feel as good. I feel better the day after my shots??? Anyway, by this time all Dr's think I am depressed and anxious and causing these things to happen. I start wondering myself and decide to get a second opinion from new neuro. I find the chief of neurology at a very respectable hospital and saw him last week.
I brought my MRI and bloodwork and I didnt say a word about MS. I tell him my timeline and he did a more thorough exam than the 1st neuro ever did. He tells me that it is a very mild case of Sensory Guillian Barre. My reflexes in my legs and feet were diminished and he starts with the symptoms, ones that I did have but had not told him yet. It was great, I finally had a diagnosis and he knew I would get better. He said the flu shot caused a relapse and that I am not supposed to get any vaccines for 2 years. He said I should have had a LP at the beginning and the window was only a month for it to show up. Also treatment is only effective in the beginning as well. By the way he is also a professor at the medical school in my city, maybe that's why he knew so quickly and all others Dr's didn't? He ordered a list of bloodwork labeled PN and I don't know the results yet. I am so relieved that it is not MS but I am still worried about the GBS. It is very hard to find info about the sensory subset and it seems to be pretty rare.
The thing that is nagging me about him is the comments he made about b12. He said it is ridiculous that b12 could causing all my symptoms and that I could be toxic from taking too much and he wants to check my levels. This bugs me! If he is so good, which I really need him to be so I can believe the dx, then why would he say that about b12?
I am the first one to laugh at the FDA, but even their website shows no toxic level for supplemental b12! My PCP said the same thing about "don't take too much". WTH?

Anyway, I ran out of the cyano shots and I waited until I did the bloodwork to begin a new regimen. I am going to get the Methyl but I have a question.

With neuro issues and stomach issues which one is best, sublingual or what? None of my Dr's are going to give me a rx for methyl shots so I am going to have to buy OTC.

Does whole foods carry these or do I have to get on internet? Seems scary getting something on internet.

I am also going to start the fiz mag that Mrs D recommended.

I take 50,000 Vit D once a month for low levels, can I still take a multi if I am taking the other stuff too? What should I worry about as far as mixing and having too much of something?

Does someone know of a good multi that is safe to take with everything else?

Thanks for everyone on this site! I have read these blogs so many times and it helps me when new symptoms appear and I get scared. You guys are a sanity saver!

Does anyone know about sensory GBS?

Thanks Again

Michelle

[glenntaj]

I had an acute-onset body-wide burning neuropathy that developed within hours on April 12, 2003. It has been likened to a sensory Guillain Barre in that it has an acute onset and is suspected to have been sparked by autoimmune molecular mimicry, as Guillain Barre often does.

Supposedly, the process starts when the body is invaded by a pathogen, whether naturally or by inoculation, which it then mounts an immune response to. If, by chance, though, the pathogen has a molecular structure similar to some bodily tissue (and this varies from person to person, but immunity works greatly by shape, by antibodies being created tht act like a "key in a lock", so to speak), the now-activated immune system may not be able to shut off; it attacks anything with the same molecular configuration, including bodily tissue.

Many people have antigens on nerve, especially in myelin sheathing, that do resemble the shape of certain pathogens (particularly H. Pylori, Epstein Barr Virus, and Campylobacter Jejuni ), and sometimes this autoimmune process eats away at the myelin quickly, resulting in neuropathic symptoms. Classic Guillain Barre often starts with sensory disruption and progresses rapidly to motor; in severe cases it can threaten paralysis of the autonomic systems. There are, though, many variants--it's entirely possible in my case the molecular similarity was to my small, unmyelinated fiber nerves that subsume the sensation of pain and temperature, leaving me with symptoms of burning pain but no motor disruption (this is referred to as acute onset small-fiber neuropathy). Yours may have been similar and/or involved slightly different nerve categories.

Acute onset neuropathies such as Guillain Barre will generally receed over time, but they do often leave lingering symptoms/disabilities--the general prognosis is "slow, partial recovery". I know I'm still prone to flares,a nd I'm very sensitive to nerve compressive effects; I probably have a degree of permanent damage, although I've undoubtedly have had considerable re-enervation over time, which skin biopsy confirms.

BTW, many people think that chronic inflammatory demyelinating polyneuropathy, or CIDP, may represent a slower onset, relapsing/remitting version of Guillain Barre, and it too has various variants depending on the original target of the attack.

One other thing--don't assume that this may not have been primarily due to B12 deficiency. B12 deficiency is the great mimicker--it's been confused with Guillain Barre, CIDP and other neuropathies, MS, other demyelinating diseases of the spinal cord, etc. Lack of B12 will evenutally cause deterioration of all kinds of bodily nervous tissue, and depending on whether the deterioration occurs faster in the central or peripheral nervous systems, or in the brain (B12deficiency can actually cause white matter lesions there that may look like the aftermath of stroke or MS), one can get all sorts of confusing symptoms.

Fortunately, B12 deficiency is treatable, if recognized--many have good results with injections, but people who need a more steady supply should go the oral supplementation route, taking 1000-5000mcg/day, so that one ensures that one gets enough through the 1-2% passive absorption the intestines allow--people with deficiency are usually not absorbing through the stomach, due to lack of intrinsic factor or some other reason.

Also, as far as that doc you're talking about--I know of no known toxic B12 level--there've been studies in Japan supplementing with 36000mcg/day with no side effects beyond increase in energy.

[mrsD]

Your neuro is behind the times, severely.

About a decade ago thoughts about B12 started to change with doctors. It is pretty frightening that many still harbor the old
beliefs.

This article is written for them...it was posted in 2003.
http://www.aafp.org/afp/20030301/979.html

http://ods.od.nih.gov/factsheets/VitaminB12.asp

Do healthy young adults need a vitamin B12 supplement?
It is generally accepted that older adults are at greater risk of developing a vitamin B12 deficiency than younger adults. One study, however, suggests that the prevalence of vitamin B12 deficiency in young adults may be greater than previously thought. This study found that the percentage of subjects in three age groups (26-49 years, 50-64 years, and 65 years and older) with deficient blood levels of vitamin B12 was similar across all age groups but that symptoms of vitamin B12 deficiency were not as apparent in younger adults. This study also suggested that those who did not take a supplement containing vitamin B12 were twice as likely to be vitamin B12 deficient as supplement users, regardless of age group. However, people who did not use supplements but did eat fortified cereal more than 4 times per week appeared to be protected from deficient blood levels of vitamin B12. Better tools and standards to diagnose vitamin B12 deficiencies are needed to make specific recommendations about the appropriateness of vitamin B12 supplements for younger adults [51].

What is the health risk of too much vitamin B12?
The Institute of Medicine of the National Academies did not establish a UL for this vitamin because vitamin B12 has a very low potential for toxicity. The IOM states that "no adverse effects have been associated with excess vitamin B12 intake from food and supplements in healthy individuals" [7]. In fact, the IOM recommends that adults older than 50 years get most of their vitamin B12 from vitamin supplements or fortified food because of the high incidence of impaired absorption in this age group of vitamin B12 from foods that come from animals [7].

The two most likely drug culprits that are impairing B12 are:

1) long term use of acid blocking drugs. People are given these like candy by doctors who then fail to monitor their B12 status and/or neuro side effects.

2) metformin for Type II diabetes and insulin resistance including PCOS.

There are millions and millions using these two types of drugs daily!

[nide44]

Methylcobalamin is the best absorbed type for the best results.
Sub-lingual- or not, is a controversy, but I take it under the tongue.
Jarrow is a good brand. I use 1000-2000mcg (1-2 mgs) per day.
I find it very economical at 'iHerb' (www.iherb.com) when I buy
4 or more bottles of 100 lozenges ea. - less than $8 a bottle.
(7-8 cents ea). I also buy other suppliments at good prices at the same time and get free shipping.

[mrsD]

From where I sit, it seems to me you should avoid ALL vaccines, unless there is some national emergency/terrorist attack.

Vaccines are huge triggers for neuropathies, especially the autoimmune type.

[mrsD]

with big words, when they have NO CLUE. This tactic is very effective with just about EVERYBODY...

In the case of this "diagnosis" followed by total ignorance of B12 and how it works...I decided to search this.

http://www.neurology.org/cgi/content/abstract/56/1/82
How rare is it? Totally so rare that less than 10 people have been written up. And those only had one person with some sensory loss.
Another:
http://neurology.jwatch.org/cgi/content/full/2001/328/1

This diagnosis of course, has no PROOF. But the big words do work a placebo magic of sorts.

Do this: Ask your doctor if you should avoid flu vaccines in the future. I'd be very interested in this answer. (most neurologists blame vaccines for GBS).
We've had patients on this board (and its sister that preceded it) for over a decade who developed GBS after vaccines.

In general when there are no "footprints"...doctors blame viruses. But the proof is always lacking. "Post viral syndrome" is more accurate, than sensory GBS, IMO.

A neighbor of mine had GBS following chemo for breast cancer. I watched her decline within HOURS to a vegetative state. I called her husband from out of town to come home, EMERGENCY and she ended up in the hospital for WEEKS...and luckily recovered with plasmapharesis (which was rather new at the time). There were MANY on her floor with the same diagnosis who could NOT afford the treatment, and they remained permanently paralyzed.

[ru2l8]

[QUOTE=mrsD;459869]Your neuro is behind the times, severely.

About a decade ago thoughts about B12 started to change with doctors. It is pretty frightening that many still harbor the old
beliefs.


Thanks for the respnse Mrs D. Regarding the PCOS, my gyn has tried to dx me w/ pcos b/c of cysts on folicles. SHe says it is a mild case and to watch it over time. I have wondered about hypoglycemia n the past but my fasting glucose level is always in normal range so Dr say no. Is there a better test I should do for DiabetesII? I have wondered about the 5hr insulin test but dont know if that is the best one and how to get my PCP to order it.

[ru2l8]

Originally Posted by nide44

Methylcobalamin is the best absorbed type for the best results.
Sub-lingual- or not, is a controversy, but I take it under the tongue.
Jarrow is a good brand. I use 1000-2000mcg (1-2 mgs) per day.
I find it very economical at 'iHerb' (www.iherb.com) when I buy
4 or more bottles of 100 lozenges ea. - less than $8 a bottle.
(7-8 cents ea). I also buy other suppliments at good prices at the same time and get free shipping.

Thanks Bob
I am going to try whole foods and see what they have for methyl. I let you know what i find.

[ru2l8]

Originally Posted by glenntaj

I had an acute-onset body-wide burning neuropathy that developed within hours on April 12, 2003. It has been likened to a sensory Guillain Barre in that it has an acute onset and is suspected to have been sparked by autoimmune molecular mimicry, as Guillain Barre often does.

Supposedly, the process starts when the body is invaded by a pathogen, whether naturally or by inoculation, which it then mounts an immune response to. If, by chance, though, the pathogen has a molecular structure similar to some bodily tissue (and this varies from person to person, but immunity works greatly by shape, by antibodies being created tht act like a "key in a lock", so to speak), the now-activated immune system may not be able to shut off; it attacks anything with the same molecular configuration, including bodily tissue.

Many people have antigens on nerve, especially in myelin sheathing, that do resemble the shape of certain pathogens (particularly H. Pylori, Epstein Barr Virus, and Campylobacter Jejuni ), and sometimes this autoimmune process eats away at the myelin quickly, resulting in neuropathic symptoms. Classic Guillain Barre often starts with sensory disruption and progresses rapidly to motor; in severe cases it can threaten paralysis of the autonomic systems. There are, though, many variants--it's entirely possible in my case the molecular similarity was to my small, unmyelinated fiber nerves that subsume the sensation of pain and temperature, leaving me with symptoms of burning pain but no motor disruption (this is referred to as acute onset small-fiber neuropathy). Yours may have been similar and/or involved slightly different nerve categories.

Acute onset neuropathies such as Guillain Barre will generally receed over time, but they do often leave lingering symptoms/disabilities--the general prognosis is "slow, partial recovery". I know I'm still prone to flares,a nd I'm very sensitive to nerve compressive effects; I probably have a degree of permanent damage, although I've undoubtedly have had considerable re-enervation over time, which skin biopsy confirms.

BTW, many people think that chronic inflammatory demyelinating polyneuropathy, or CIDP, may represent a slower onset, relapsing/remitting version of Guillain Barre, and it too has various variants depending on the original target of the attack.

One other thing--don't assume that this may not have been primarily due to B12 deficiency. B12 deficiency is the great mimicker--it's been confused with Guillain Barre, CIDP and other neuropathies, MS, other demyelinating diseases of the spinal cord, etc. Lack of B12 will evenutally cause deterioration of all kinds of bodily nervous tissue, and depending on whether the deterioration occurs faster in the central or peripheral nervous systems, or in the brain (B12deficiency can actually cause white matter lesions there that may look like the aftermath of stroke or MS), one can get all sorts of confusing symptoms.

Fortunately, B12 deficiency is treatable, if recognized--many have good results with injections, but people who need a more steady supply should go the oral supplementation route, taking 1000-5000mcg/day, so that one ensures that one gets enough through the 1-2% passive absorption the intestines allow--people with deficiency are usually not absorbing through the stomach, due to lack of intrinsic factor or some other reason.

Also, as far as that doc you're talking about--I know of no known toxic B12 level--there've been studies in Japan supplementing with 36000mcg/day with no side effects beyond increase in energy.

Thanks Glen, it helps when someone has had a similar experience. I think my main problem is the intrinsic factor and I know I will need b12 for the rest of my life. I have been taking acid reducers and blockers since I was 14, now I am 34.


I have had two mri and they were completely normal, I read results and everything was unremarkable and no signs of any lesions. So I am good there.

You said you still have effects, are there any tests that you have done that came back abnormal? All of mine are normal except b12 and reflexes of knee and foot. This is why Dr said GBS. It did start right after the worst illness I have ever had, fever 102.5 that would not go down w/meds and EXTREME diarrhea that caused life threatening dehydration. I completely recovered from initial illness within 2 days, w/ weakness for 2 more days.

Dr says it I will heal totaly but it will take 4-6 months. He said no vaccines for 2 yrs and try not to get sick also.

The most annoying symptom I have right now is my proprioception. If I am not looking at my movement my brain thinks my body is in a different spot???Its hard to explain but it is constant if i am moving.


When I get all the labs back that he ordered for PN will that tell me if I have CIPD? I am getting better but it is slow going.I tell myself that the proprioception will get better and this relapse only has 3 more months to go.

Thanks
michelle

[ru2l8]

Originally Posted by mrsD

with big words, when they have NO CLUE. This tactic is very effective with just about EVERYBODY...

In the case of this "diagnosis" followed by total ignorance of B12 and how it works...I decided to search this.

http://www.neurology.org/cgi/content/abstract/56/1/82
How rare is it? Totally so rare that less than 10 people have been written up. And those only had one person with some sensory loss.
Another:
http://neurology.jwatch.org/cgi/content/full/2001/328/1

This diagnosis of course, has no PROOF. But the big words do work a placebo magic of sorts.

Do this: Ask your doctor if you should avoid flu vaccines in the future. I'd be very interested in this answer. (most neurologists blame vaccines for GBS).
We've had patients on this board (and its sister that preceded it) for over a decade who developed GBS after vaccines.

In general when there are no "footprints"...doctors blame viruses. But the proof is always lacking. "Post viral syndrome" is more accurate, than sensory GBS, IMO.

A neighbor of mine had GBS following chemo for breast cancer. I watched her decline within HOURS to a vegetative state. I called her husband from out of town to come home, EMERGENCY and she ended up in the hospital for WEEKS...and luckily recovered with plasmapharesis (which was rather new at the time). There were MANY on her floor with the same diagnosis who could NOT afford the treatment, and they remained permanently paralyzed.

You are such a help to so many people Mrs D. I have read so many posts that you written and I appreciate you, your thoughts, and experience!

Dr says GBS was b/c of initial virus and the flu shot in OCT caused a relapse. He said NO vaccines for two yrs. He said that it is very rare and I am lucky that it is only sensory and mild weakness in muscles. He also said that I am perfectly healthy otherwise and all symptoms will go away and that once I get over it I am no more likely to get it again than anyone else. According to him b/c there is no paralysis most Drs would miss the diagnosis, and that is why it is a subset of GBS. He said there are sensory ad motor versions and I have a mild case of sensory.