New to the site and navigating confusing symptoms from teh USA

I’m new to this site, 37 and living in the USA. Probably like many of you, I’ve found this site from hours of research on my bizarre symptoms. I’ve been diagnosed with "suspected PA", not because I lack intrinsic factor, but because I tested positive for partial cell IGG antibodies.

Starting in January 2019, I began to have a series of strange and alarming symptoms that lead to multiple ER visits. It started with digestive issues and exhaustion. It evolved into episodes of reactive hypoglycemia, feeling dizzy and faint all the time, and having weak legs and feeling like I was having trouble walking, and an icy-hot sensation in my right foot. I also started having tingling in my hands and feet. Multiple medical visits and tests found no cause for these symptoms, and then, they mostly disappeared for a couple of months. My GP noted that I had low B12 (230) and should supplement. It was NOT the suspected cause of these symptoms. Not knowing better, I started a daily generic multi-vitamin, which I stopped after a few weeks because I was getting headaches from it.

In August everything came back at a fairly high intensity, including some issues with blurred vision. I had a brain and optical MRI, which showed no evidence of demyelination related to MS. I have a GI healthcare provider at the Mayo Clinic, and I asked him to re-run some tests, including B12 levels. Turned out my levels had dropped from 230ish to 170, which completely alarmed my Dr. He ordered an endoscopy which revealed that I had SIBO (Small Intestinal Bacterial Overgrowth), which notoriously causes B12 absorption issues. The endoscopy did not show destruction to my stomach lining, so the Dr’s have concluded that I am likely in an early stage of PA, due to testing positive for IGG partial cell antibodies. I immediately was put on a course of strong antibiotics for SIBO and began B12 injections. In the USA, the protocol is 1 shot x 1000mg per week for 4 weeks, followed by 1 per month thereafter.

The problem as been that about two weeks after my “loading” dose, I started to have neurological symptoms again. I’m not sure if this is a B12 issue or something else. I have an EMG scheduled for next week. My symptoms include muscle twitching, muscles that feel tight in my back, pain in my right arm, and a strange tension that comes and goes from my hand. When I workout, the muscles on the right side of my body fatigue faster than the left with a burning sensation in my muscles. I also have been getting tingling and burning in my hands and feet, and some dizziness. I haven’t ever lost functioning of a hand or foot, it’s more strange sensations.

I’ve been reading through the site and it sounds like I could benefit from a higher dose of B12. My Dr said we could consider that after the next round of neuro testing is complete, but it would also be based on my B12 levels. I also feel scared by all of this and hope it’s not more than B12. I have not been referred to a neurologist and wonder if that is something that I should push for after my next test results.

Anyone else dealing with similar symptoms? Are there any resources for USA Dr's that might encourage a high dose treatment? I purchased the book "Could it be B12?" and gave a copy to my Dr. The books does not cover some of the higher dose protocols that are mentioned here on this site.

Your input is appreciated! And thank you for your contributions to this community.

[spacey1]

Lots of people on here are more knowledgeable than I am, but until one of them comes along, often the initial regime of B12 isn't enough. There is absolutely no point in testing once you've started supplementing, because blood levels will be sky high regardless of how much b12 is 'available' for your system to use. Mine has tested over 2000 when included in a full blood count, but I need to supplement weekly to stop the symptoms returning.

Good luck, and welcome! You'll find lots of helpful advice on here

[Gambit62 Administrator]

The book was written by a US medical professional and, as I remember it, is more about diagnosis than treatment.

Treatment of PA in the UK is somewhat different from that used in the US - particularly the form of cobalamin used. Different protocols are used as result.

You could try pointing your GP at the PAS website and giving them a copy of the BCSH standards which you may be able to find here - these are referenced by the AAFP. Main point is that treatment shouldn't be based on serum B12 levels and repeated testing of levels after loading shots isn't recommended.

Serum B12 is a difficult test to interpret anyway - its only accurate to 20% and post loading shots the normal range just doesn't seem to apply - which is one of the points that they try to make in "Could it be B12?"

pernicious-anaemia-society....

onlinelibrary.wiley.com/doi...

aafp.org/afp/2017/0915/p384...

also this article by a haematologist which mentions allowing patients more frequent injections where they find that normal regimens aren't working for them

ashpublications.org/blood/a...

Also good to keep a diary to demonstrate link between symptoms returning and injectiosns

[Justiina]

Hi! I am in same boat , got MS diagnose last spring based on MRI. My symptoms are almost same than yours and I am on B12,B6,B1 injection and my functional doctor suspect SIBO!

I am from Finland. I need to re-read your message as I am very overwhelmed at the moment of the similarity of the situation.

[Hidden in reply to Justiina]

Hi Justiina, sorry to hear about your troubles and your recent diagnosis. Did you have both a brain and a spine MRI? I only had the brain MRI but I do not have signs of MS. My symptoms seem to be very similar to MS though. You are lucky that you have a functional medicine doctor! Being treated for SIBO helped with my digestion a lot. I hope that I can figure the rest of my symptoms out!

[Justiina in reply to Hidden]

I had brain and spine MRI, showing some signs of MS , very mild tho. No signs on spine but like you I only have had weak muscles and tingling here and there. Only typical MS symptom is fatigue.

Most of symptoms disappear when I get injection, but for me it only lasts 3-5 days, fortunately I get to choose how often I get injection. But it isn't ideal situation and we are not sure which one is the most important B12, B6 or B1, my doc bet B6 as it's often related to these type of symptoms. I do too have low B12 and high homocysteine. Also low prealbumin indicating protein deficiency/malnutrition despite proper diet.

My SIBO situation is still unresolved, could try fluconazole but the problem is that SIbo tends to return. Other option is long term natural antibiotic course, ie garlic, oregano oil etc.

I even have the same problem on the right side of the body as you. In my case damage could be permanent, as I fell ill 20 years ago after multiple infections and loads of antibiotics.

[Hidden in reply to Justiina]

I wonder about getting a second opinion on MS if the symptoms were very mild? I'm still learning about how B12 deficiency and the damage it can cause. For SIBO, I had really bad GI issues for 7 years and had every test under the sun, but was never tested for SIBO. For me, the symptoms related more to lack of movement rather than too much. I was only tested for SIBO this year when I found out that by B12 levels were low. I took Xifaxan for two weeks, and that seems to have resolved things, although I have had no follow-up tests. I would like to work with a Functional Dr like you are, to be sure i'm not having a relapse which will cause more absorption issues. I also have low B1 and have been instructed to take 300 MG per day, but I can't sleep at night when I take it, so I take it a couple of times a week rather than every day. Maybe ask about a more frequent B12 shot without B1 & B6?

[Justiina in reply to Hidden]

Oh how cool your B1 was tested too. Mine wasn't, it was trial and error type of experiment with the combo injection. To me it worked so clearly there was a need for B1 and B6.

B1 ,I feel ,helps with digestion, B6 with muscle issues/weakness and B12 with constant yawning/brain fog/ fatigue.

All in all, after the injection I have warm nice veeeery relaxed feeling and I sleep so good. I can eat normally, drink coffee etc. I get nauseous if I extend the time between shots. 3 weeks is maximum if I don't exercise much. If I have physically active time then need injection every 7-10 days.

Did you have any side effects of the antibiotics, did you feel it worked fast?

My functional doc is pretty good at this area and he says it takes time to fix SIBO, or more so you can fix it, but to make sure it doesn't come back after the medication is the hardest part. Downside is, he costs me a fortune and I need to push my local hospital to do the tests for free, so slow progress, but now that they believe I have MS it's easier to push them 😆 then I can ask second opinion of MS once I have had all tests done and dusted.

[Hidden in reply to Justiina]

I was lucky, my GP is open minded about trying different tests. She suggested the B1 test because deficiencies also can cause neuro symptoms.

As for the Xifaxan, it is very expensive usually, but it was covered by my insurance. It worked really well! It’s hard to say if I had side effects, because I’ve had so many symptoms recently. It did make my stomach a little upset at first, but after the first few days I wasn’t noticed it any more. I was worried that it wouldn’t work. Prior to starting the antibiotics, my stomach was frequently bloated and upset. Now I can eat just about anything. I eat healthy anyhow...organic foods, lots of fruit and veggies, plus good quality meat and seafood. I also worry that I might relapse, but I’ll deal with that when it comes up. I should start working with a functional dr to improve my gut health. Have you been happy with yours?

[Hidden in reply to Justiina]

Also, what were your B12 levels? Just curious!

[Justiina in reply to Hidden]

Nice your insurance covered the meds and it worked! depressing to pay a lot if it wouldn't even work.

Your diet sounds healthy so that should help. Some go back to old bad habits eating junk.

Did you have any blood tests like white cells etc tested and did they change? My doc says certain changes on white cells indicate SIBO or are more likely causes by SIBO because your immune system is suffering. He says certain white cell changes after meds indicate that immune system is getting stronger and then at some point your immune system can deal with the SIBO, meaning if things go wonky your immune system helps to get rid of it.

I have had low leukocytes for no reason , but during the past 8 mo slowly slowly slowly rising, step by step and that could be because of the vitamin injection as for example B6 is very important to immune system. We are hopeful my body can deal with the rest and natural antibiotic course is enough. Oregano oil is very effective like antibiotics ,but like antibiotics it wipes down all bacteria, good ones too so nurturing the good ones right after is important.

So it require some balancing and patience, but oh well you gotta do what you gotta do!

I like my doc and things he say makes perfect sense.

My B12 level was ~170 or so, can't remember actual number but was close to lowest range which is 138.

[EllieMayNot]

My story has some similar aspects to yours. I am also in the USA and was able to use the UK guidelines to convince my GP (she is a functional practitioner so she is more open minded than many others) that I needed every other day injections per the NICE guidelines since I have demyelination due to PA/B12d (positive for antibodies to myelin basic protein).

Unfortunately, it is difficult to access the NICE website if you are in the USA because it "reads" your computers location. You can download a copy of the BHS Guidelines from the PAS if you join. A lot of useful information and you would be supporting a worthy cause.

Here is a direct quote from the BHS Guidelines:

"The BNF advises that patients presenting with neurological symptoms should receive 1000ug i.m. on alternate days until there is no further improvement. However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternate day therapy after 3 weeks of treatment."

[Hidden in reply to EllieMayNot]

Thank you, this is helpful. I became a member of the PAS and I'm going to email this to my GP. I will likely also see a functional medicince DR. There's a few who are also MD's which I would prefer. Have you heard of Parsley Health? That's their business model. I'm also wondering if I should have an appointment with a neurologist to rule out any other possible causes of my symptoms.

[EllieMayNot in reply to Hidden]

I have heard of them but that is all I can say. My GP is actually an APRN and she is far more knowledgeable about autoimmunity, PA/B12d, Hashimoto's, etc. than any MD that I have ever seen (even the specialists, including a neurologist who was the former head of the neuro dept. at a local hospital who should have known that demyelination can be attributed to PA/B12d) but I do understand that everyone has to feel comfortable with their choice. I also had a private consult with a functional nutritionist (PhD) and she was likewise more educated in autoimmunity than most. Wishing you all the best in finding real answers and a solid course of treatment!

[Emmers5]

I am also in the US so when diagnosed 2 years ago had the one a week then once every 4 weeks protocol. I was too ill to really understand what was going on but thought I was properly treated since I was getting better. Now I understand the loading doses were not nearly enough and I relapsed badly for months before finally being prescribed injections every two weeks. I kept thinking I was well but at the two year mark I am still discovering symptoms that resolve as I move forward and improve and go backwards and have symptoms return before the next shot. Just this week I convinced my doctor that better is not exactly well, and she has agreed to try weekly B12 injections for a month or two. Best of luck to you. This is a supportive and knowledgeable group here.

[Hidden in reply to Emmers5]

Thank you for sharing. Hearing other's stories is helping me to not feel so crazy about my situation. Have you also thought about working with a Functional Medicine DR to address any other issues? I think that there are some practicioners out there that are covered by certain insurance plans.

[Emmers5 in reply to Hidden]

I have not heard of Functional Medicine Drs so I will look into that. Thank you.

[Ashweb901]

Not a higher dose just more frequent injections. I'm doing weekly and sometimes every 5 days. I get teeth and gums nerve pain if I don't. Lee Silsby Pharmacy will fill scripts but many traditional doctors won't prescribe more than monthly injections. Especially with serum levels through the roof (caused by the injections). I found an integrative specialist NP who prescribes mine.

[TariTraveller]

Hello, sorry to hear about all your symptoms. I also live in the USA and had a hard time finding information on PA. I was diagnosed almost 20 years ago, so there was even less information out then. I found the PAS site a few years ago and am so grateful as it has information on the latest for treatment, trials, forums, etc. I see they have a conference coming up in December 2019 that I hope to attend. I’ve never met anyone in the USA with the condition, so I’m looking forward to it. Hope you are able to work with your GP to get your dosing correct.

Best

[Hidden in reply to TariTraveller]

Thanks Tari, any tips that have been helpful to your recovery?

[Mes814]

I found this post through your profile on the other post and wanted to comment here so I can follow your story. Hopefully you will find a resolution as well!

[Hidden in reply to Mes814]

Thank you!! Same to you. I have more tests tomorrow, so I'm curious to know the results. Are you looking to see a functional medicine DR as well? It seems that many here have had good results going that route

[Mes814 in reply to Hidden]

That is going to probably be my next step depending on what these tests from today say.

[Mes814 in reply to Hidden]

Did you mention all of your symptoms in this post or do you have more? Just curious

[Hidden in reply to Mes814]

Hi there! I mentioned most of the symptoms....the ones that I've had recently that are continuing to bother me are tingling in my hands and feet, muscle twitching all over my body (fasciculations), myoclonus that comes and goes and pain & weakness on my right side, especially in my right arm. The stuff in my right arm has actually gotten worse since I started treatment, but I'm only 2 months in, so I'm hoping it starts to improve. I went to a neurologist today and had an EMG, which was normal. The Dr. thinks that it's neurapathy caused by the B12 deficiency. He did say it's odd that it's more on one side than the other, but he thinks treating the B12 will help. Are these similar with your symptoms?

I still plan to look for a functional medicine DR. to try to get myself sorted out. I have a lot of anxiety right now, and I feel like the B12 shots actually aggrivate it a bit.

I came across this article today which is a good description of how the symptoms progress: brainblogger.com/2014/07/30...

I can tell you more about the SIBO side of things if you feel like that's an issue for you.....that was a different set of symptoms

[Hidden in reply to Hidden]

Sorry! Forgot that you mentioned you're looking to see a Functional Dr as well

[Nanc72]

US here also. Get to a hematologist. With neurological symptoms every other day until symptoms “stop” improving. I actually had to switch hematologists. It’s really hard because here they don’t seem to know a whole lot about it. They were taught you have to be anemic to have PA which is not the case!

[Hidden in reply to Nanc72]

What form of b12 are you taking? I'm on cyano right now but want to switch to hydroxo to see if I have better results. Are you finding that the higher dose is helping relieve your symptoms?

[Nanc72 in reply to Hidden]

I am on Hydroxocobalamin. I have tried to go out monthly, but I started feeling poorly again. My hematologist treats how I feel, which is amazing. I did not want to take the Cyano because of my MTHFR status, but that’s just a matter of my choice.