I am having a very bad day. I just read about Guillain Barre syndrome and am now worried that I may have that. I have had tons of blood tests, do have iron deficiency anemia, feel that I have a B12 deficiency because I had been supplementing with B12 orally for years and I still came up with a 472 B12 (200-900).
I have had MRIs of my entire spinal cord and two of my brain. Have had CTs of my neck, brain and abdominal area. I have tested negative for autoimmune disorders on blood tests, but persist with peripheral neuropathy and weakness in my legs, sometimes arms, vision problems, bowel and bladder lack of sensation, balance problems, fatigue, shortness of breath, periodic heart palpitations, nausea and gagging, brain fog, anxiety. I have self injected cyanocobalamin every other day for about nine months now, but am just blindly struggling to try to figure out supplementing with iron and Folate. My doctors don't deal with nutrition at all.
Because I have iron deficiency anemia and have had several stomach surgeries, PA seems like a realistic diagnosis, but when I hear of other possible diagnoses, I panic.
Because of the body wise lack of sensation that I experience, it is hard to tell if I am getting better or worse. I have just started using HCL with Pepsin and digestive enzymes. I thought that B12 injections would immediately cure me and they have not. Any assurances would be most welcome.
Many thanks, Sita
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Sita505USA
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Does sound like a very bad day. The problem is when you haven't a diagnosis yourban symptoms can be so many things and fit many things you read about. When you are feeling si I'll you will get anxiety it's normal.
I suggest you keep going back to the doctor to get referrals to different specialists. It took over 2 years to get a proper clear diagnosis for my daughter.
Keep going with anything that helps your symptoms until the right doctor puts the jigsaw puzzle together
The trouble Is specialists don't talk to each other. The g.p has all your info.
Thanks so much for your kind response. I have seen many specialists, but as has been said, they don’t talk to each other. My primary should coordinate, but doesn’t. We have a huge doctor shortage here in the US.
I can relate to that as I too wondered at one stage if I had it
However it's unlikely as its presentation and incidence is slightly different to what you've presented
However your symptoms can absolutely be linked to b12 folate and iron deficiency
Do you have any of your actual test results ? Please post them alongside your ranges in the original message and people will be able to help you bring up those levels
I felt like death until all 3 were corrected and including vit D-( are you supplementing ? Alongside magensium and vitk2 Mk7?. Has vitD been tested too?)
I think it would be wise to get these optimal first and then see how many symptoms you have left over
You will probably need a good b complex to go along with b12&folic acid
If you have had stomach surgery you are most likely having issues with absorbing all vifmains and minerals so I would start with that
You could try apple cider vinegar if you find the HCl and enzymes too much to handle
I supplement with D and the levels are ok. I take Folate and Magnesium. My test results are about a year old and only the B12 was problematic in my opinion before supplementing with B12.
My iron and ferritin both get low and I have iron infusions when they get too low. I see a new gastrointestinal doctor in Javan’s will see if she will repeat the blood work. One of the problems is that I have had so many gastrointestinal doctors. There is a bad doctor shortage here in the US.
I will look into vitamin K as you suggested. I will reread your email for the other vitamins as well.
Yes Def add vit K2 Mk7 (has to be this specific type) to aid vitD and magensium by directing calcium to bones not blood
However if you are on blood thinning medication etc do consult your doctor too.
Are you supplementing with b12 oral tablets ? Or a spray
Sublingials and sprays absorb much better than tablets as they are absorbed into the blood stream in the mouth.
Tablets go via your stomach and still need absorbing in your intestine so it may well be that your levels are not high enough
Did you actually get tested for PA antibodies to rule out the condition ? If you have it which given your surgeries may well be- then u need lifelong injections which will work better
Worth asking your consultant doctor - they should be well aware
I supplement the every other day B12 injections with sublingual B12, but would appreciate a specific brand referral for those or a spray/patch. I really cannot tell that anything is making any difference, I just keep trying. I believe the doctors have given up on me. They did not test for PA antibodies, just assumed from the 472 number (200-900 range), that I was not B12 deficient. My MMA, (is that right?) was within normal range.
If you have a good brand recommendation for the K2MK7, that would be much appreciated. I have cabinets full of supplements; want to now only buy those that work well!
I'm in the UK and I use an oral vit D spray with k2mk7 from a.company called 'better you'
Not it sure if it's available in the states but I don't think you can go wrong really if you find the specific type of k2mk7. (rather than general vit k1 or k2 etc)
It eliminaes the ambiguity if that makes sense
I used the same.company for their b12 oral spray which I felt helped me to top up in between injections
The biggest difference I felt with b12 was the first week. After that the injections don't feel much different although after 2months I do believe I get symptoms again with fatigue and pins and needles OCC
Everyone is different but yours may be other conditions too
I, too, suspected that I may have Guillan-Barré Syndrome. But my neurologist ruled it out when my nerve conduction studies showed that it was only my sensory axons that were affected with the motor neurons and muscles OK. So I looked into it before I got my diagnosis.
An MRI should show some differences, but a lumbar puncture should show increased protein in the CSF.
Your symptoms may be caused by a B12 deficiency. The neurological symptoms can take a long time to resolve. And B12 supplements won't do anything to fix the gut problems.
So my neurological evaluation showed no large fiber neuropathy, but didn’t test for small fiber neuropathy. I have no idea how that relates to what you said! I have seen a total of four neurologists, surely one of them would have ordered a puncture if they felt it was indicated...
I am taking HCL for the stomach stuff, with digestive enzymes; do not want to take PPIs again!
What tests have you undergone to rule out large fibre neuropathy? I have very similar neurological symptoms as yours and I have tested negative for nerve conduction study and enmg. There's only one test to diagnose small fibre neuropathy and that's is a skin biopsy and that is hardly done.
It was nerve conduction and EMG, not fun, all normal! My primary said there was no cure for small fiber neuropathy, but I could have test test so that I knew I had it.. I am very tired of being poked, and the primary saw no reason to do it..
There is a cure to small fibre neuropathy, as told by my neurologist, if b12 deficiency is only the cause. But, b12d is very complex and nerve damage reversal is highly unpredictable.
Oh gosh! Sounds like you've been through the wringer. I would suggest that you try going to a nutritionist. I had a GMAP done and got a nutritionist to advise me on all of my various vitamins/minerals. It cost a fortune (£400 for the test plus £100 for the consultation) but I feel much better informed. I hope you find the right person to help you.
I had a NutraEval that recommended B12, B1, Magnesium and a pancreatic enzymes. They suspected malabsorption. None of my doctors give it any value. I haven’t found a reputable nutritional doctor here. I have spent so much on medical care, that I am reluctant to just keep experimenting!!😏
I really sympathise. On a completely unrelated note I had back problems, went through six NHS departments over two years, was diagnosed with disease after disease and eventually told I'd have to have chronic pain management. After spending £1000 on a chiropractor over a year and sinking into a deep depression I found a sports physio who completely fixed me in two sessions. What I'm trying to say is, yes, it's demoralising; yes it's expensive; yes, it may take some time, but there is someone out there who will be able to help you. Don't give up.
The problem with self diagnosis is that there are so many conditions which can similar symptoms so it needs the General Practitioners to sort the wheat from the chaff. It have been getting worse with peripheral neuropathy symptoms for the past 12 months and although more frequent SI B12 helps it is only for a few days at a time. Then a few weeks ago I made a large Tiramisu and some Creme Brulea and as no one else can to eat them I had most of them. I also had a problem with having to lift an elderly relative and developed a pain in the side which wouldn’t go away. So I went to see the GP, one who knows me well. The upshot of all this is I now have 2 more pills twice a day, 1 for Diabetes Type 2 and the other for atrial fibrillation that was incidentally found.
The tinglings are getting better and not too breathless. The ban on sweeties (candy) means I have to take care to stop my trousers falling down. My feet feel as though they belong to me again.
No idea. It’s a thought though. It’s a bit of a nuisance to start a restricted diet ‘at Christmas’ when rich sweet stuff is everywhere. I was destined to provide the puddings for the family weekend and the Rum and raisin cheesecake was one of the best yet. I did get a small bit.
After a month of sugar free everything I am finding I need to punch some more holes in my belts to stop trousers falling. Sadly coffee still tastes foul.
Merry Christmas, everyone, and a Fatigue, tingle, tinnitus, sore tongue etc free New Year.
Chronic infection and toxins can cause neuropathy as well. Not just B vitamin deficiencys. However, if you have a problem with chronic infection and toxins it will deplete your nutrients.
Ps mri and nerve conduction tests dont always show neuropathy...
You may have B12 deficiency but you have to look at what's causing it. This helps you to recover. Theres a reason why your struggling to absorb and retain it. For example, is it chronic infection depleting your b12 or low stomach acid (poor gut health), P.A etc. If you have absorption issues B12 won't be your only deficiency. What was your original B12 level without supplements? Do u have P.A?
I was taking a multi vitamin with B12 and the other Bs and had been for years prior to getting my B12 tested. I knew nothing about any of this, including the fact that supplements would skew the results of tests. The doctors and lab techs were clueless as well, so my B12 was 472 (200-900) with the supplements. My doctor didn’t feel that was significant. A neurological doctor I saw said she supplements under 500.
On my NutraEval it was 500 after several months of self injections. I questioned my primary doctor about that and she asked the doctors at NutraEval, but couldn’t remember what they said. A B12 blood test in September showed a level of 4,000, again after continued self injections.
I have had stomach surgeries, including a bowel resectioning in 2012 when the real problems started with iron absorption. I see a new Gastrointestinal doctor in January and hope she can clarify things. Getting a diagnosis or any help with the nutritional aspects to coordinate Folate, B12, Iron, etc seems impossible where I live!
A vitamin b complex will give u very small doses of b12. If b12 is injested it is poorly absorbed by the tummy. Mouth sprays are better. However, Its good that your getting injections. They are the best.
Yes it does sound like you have stomach issues which are affecting your absorption. I would ask your dr if digestive enzymes, probiotics or hcl would help you? HcL is only for when stomach acid is low though. You need a drs guidence. I go to a functional dr that has conventional training. I find them better..conventional drs recieve very little training on vitamins and minerals. They are really only trained in pharmaceutical drugs. Good luck!!
I am taking HCL with Pepsin and digestive enzymes. A functional medicine doctor would be great, but I haven’t been able to find a good one here. I have used a couple of doctors who supposedly knew nutritional aspects, but they were not helpful, very expensive and all out of pocket! I would pay if I knew that the doctor would help me and there was an end in sight...
Thanks so much for your input. The members on this board have been the only shining light and help in this long and frustrating process!
No problem at all. I know it's such a challenge to get well after being so poorly. Yes functional doctors are expensive. I don't know where you stay but I think there's some in London and 1 in stirling. A lot of these drs use Skype to manage people further away. Therefore distance isnt such an issue.
You could buy books by functional doctors to learn more and use their websites. Theres a lot of free information on their web pages. Dr mark hyman, dr sarah myhill and dr datis kharrazian etc. Have a lovely Christmas .
my symptoms are almost identical to yours.....i was injecting every other day with one step forward and 3 steps back....then i began injecting every day....in the last fortnight i have been injecting cyanocobalamin twice a day, morning and evening, and it is now one step forward and one back.....i can really feel the difference and the heart palps, night sweats, crucifying 24/7 anxiety, diarrhea, nausea are gone.....my balance and the leg weakness and body pain are improving some days better than others........it took a long time to get deficient and you might be one of those who needs to keep their levels very high. I also take folic acid, vitamin D, magnesium/calcium/zinc tablet, a low dose iron and b vitamins tablet and recently added selenium to the mix as feel i may have a thryoid problem. I also had ct scans, mris of brain and back, nerve conduction tests and buckets of blood tests. Apart from some small vessel disease in brain - which i suspect was caused by high homocysteine levels. I also tested negative for intrinsic factor antibodies. The only thing that results in any improvement for me is keeping my levels ultra high. wishing you love and luck on your journey to health. You will get there. J
Thank you for being encouraging! I could do daily for just a bit. My doctor is reluctant to prescribe B12 for me. I got my current prescription from a doctor who has retired. I have given my doctor recent journal articles stating that B12 will not hurt you and she still persists in believing that every other day for so long is bad and not done. I gave her information on this website but she can’t stomach the idea of another password!
I may try once a day for a month.
Does anyone living in the US know if Customs, or whoever actually prosecutes people ordering B12 from Canada?
In case it might help, just wanted to mention: in the US (I live here too), my naturopath prescribes injectable B12 for me, and I found methylcobalamin was much better for me. My family doctors didn't think I needed B12, and didn't think I have PA, even though a hematologist did the parietal cell antibody test and it came out positive, 2 times! Dr. Kimberly Hindman in Portland helped me a lot, she an also help via distance since you live out of state.
I’m in the same position as you. No diagnosis since July and unable to work, drive or function like I used to and nobody knows what the problem is. I have seen numerous consultants, had lots of tests and scans and nothing. I tried acupuncture, traditional Chinese medicine, reflexology, all possible relaxation techniques and mindfulness but nothing helped. I stopped supplementing b12 as I got a very bad reaction to just one injection, I gave up on my doctors and supplements. I was on the verge of a nervous breakdown and worried I would end up disabled and unemployed. I feel completely helpless and I decided to look for alternatives. I looked for bio energy healing. I already had one session and I’m feeling better. I’m going to continue in the New Year. It seems sometimes it’s impossible to be diagnosed and treated. Conventional medicine and doctors have let me down completely.
Have you been tested for coeliac disease? What sort of diet do you have?
For me, I have been tested and am not celiac. I have tried elimination diets without success. I am doing injections, supplements and am also dabbling with energy healing; the jury is still out on everything!
Hang in there, it is the only option!
Sita
You have had several stomach surgeries. That seems to be the first sign that some malabsorption problem may exist and probably will exist in the future. You should consider using probiotics as they assist in digestion, specially with people who have a compromised digestion like yourself. I don't think you have Guillain Barre Syndrome as your doctors would have detected it by now with your blood tests. Your symptoms are very similar to B12 deficiency. My recommendation is not just B12 injections, but the whole B-complex injections. That still leaves several nutrients that need to be supplied such as all the minerals, vitamin C, A, D, and K. You can go to the store and buy Centrium but since you have a malabsorption problem this might not be enough. You might want to try G&G Xtra Protecta vitamins and minerals from the UK. These are SUBLINGUAL vitamins, meaning that they absorb thru the blood vessels under your tongue directly into your bloodstream, bypassing the digestive system and liver. I have a belief that this can be very helpful to people like you with a compromised digestion. This brand that I mentioned is the only one on the market right now to supply both vitamins and minerals sublingually. Get it soon before it gets discontinued. Without them you will have no options. Their website is gandgvitamins.com and if you live in the UK you can get them from amazon.co.uk.
Thanks so much for your kind posting. I agree that my stomach is probably the root of all of my problems. I do take probiotics daily. I tried taking a good B complex and got a very elevated rating on my B6. B6 isn’t water soluble and can cause a myriad of problems. I take a good whole food multivitamin along with Magnesium, Potassium, D3, calcium and a few others.
Oh my yes, I was tested for Celiac, it was negative, and was gluten free for awhile with no real results.
It was interesting to read through this entire chain of posts. Yesterday, I had a very sensational day where I really felt almost normal except for the ongoing vision problems and lack of sensation for bowel and bladder functions.
I continue to self inject every other day, and to take both methylcobalamin spray and adenosylcobalamin sublingual daily.
My stomach issues continue, but I am hoping that today will be good too. Having an invisible chronic illness isn’t for sissies. The amount of effort it takes to keep carrying on is overwhelming. I appreciate this board so much and continue to read it daily. It gives me hope and I am grateful for you kind folk who take the time to post and encourage!
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3 Month Update. Input Requested
B12 deficiency genetic? Is it PA?
Nausea and vomiting stopped by one B12 injection an indication of undiagnosed PA?
