Hi again lovely folks, and a big thanks to those "constant" heroes in this forum; who stick around to help us "worried-up" trainee Health Detectives
To set the scene my lovelies - I was in here a while ago looking for the cause of my awful symmetrical Peripheral Neuropathy (PN) in my hands, feet and ongoing tinnitus. I did lots of tests myself, and worked on my GP to do them too. Despite my consistent symptoms, and consistently high MCV, low RBC and borderline on iron. B12 Def was ruled out after the B12 serum test was in normal range. My GP said its nothing really to worry about - but more than likely to be due to my consumption of ...wine.. Oh the Shame!
Anyways, being over 60, but still a bit of a weekend party person i thought - okay I would stop drinking - if thats it. -So, I did. I have done so for over 14 months now. Not a drippy drop, and stuck with 0.0 beers.
BUT ...the horrid PN remained - and then, recently a NCS study confirmed nerve damage in my feet - and the PN has spread to the whole of my feet..and its worse in my hands now too...and my tongue is hot and tingly...the tinnitus is still here...and i have deep pains in my legs...all the time..
My 1st conclusion? - the PN hasnt been stopped by going sober. The alcohol doesnt "destroy" the nerves directly. In fact, I still believe i am B12 def. Spinal issues having been ruled out by MRI x 2.
So, my learnings/conclusions here are as follows - 1 - Get Tested More! I am going to pay for the MMA, Active B12 and Homocysteine bloods, as my GP has already said no. AND...I will be going on SI HydroxyColbal from Apohealth.de this week regardless.
But my 2nd conclusion? - ITS ALL ABOUT MY DIGESTIVE CYCLE..I firmly believe that thats the starting place of my horrid and terrifying ongoing PN problem. Malabsorbtion.
Despite really good diet, I am not absorbing the right nurients / producing enough / any - active B12 in the methyl cycle nor active Folic Acid as i remain slight aneamic and have the same blood test situation. The alcohol may not have been helping and it could well have help mess up my terminal Ilium biome - but now, I feel the issue is malabsorption of the right nutrients from (probably) a lack if Intrinsic Factor, plus the erosion of my stomach wall which has been found as well. Add in me having a long history of GERD and HPylori issues - I think that Malabsorbtion is the culprit.
My Outlook now - 1 - Stay sober. If feel that any folks with PN should considerably lessen their drinking. 2- Always trust how YOU feel - not what your GP says. I feel so stupid. 3 - Always be your own Health Detective 4 - Focus heavily on your diet and digestive tract biomes - this gives you some chance of improving absorbtion. 5 - Take you health in your hands if your GP wont and you feel its fully necessary.
I just wanted to share my story / findings with you good people . I have quite a few peer reviewed studies and papers from the US about all this - Alcohol / Diet-Malabsorbtion-and the Methyl Cycle and resultant B12/Folic Acid deficiencies if anyone would like them.
I dont think i have anything totally definitive here folks - just some painfull realisations made over the last 3 years. I hope it helps some people in here - just as some people in here have helped me. Kx
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Treesong2023
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If I had to give up wine as well as everything else I have given up- gluten, dairy and sugar - life wouldn't be worth living.
There are so many theories about what causes PN floating around. High blood sugar is probably a major cause as so many people with diabetes type 2 have it. Apparently high levels of sugar in your blood damage the tiny blood vessels that supply your nerves.
I don't understand why your GP picked on your alcohol consumption as the culprit. The NHS states that 'excessive alcohol drinking for years' may cause it. From what you say you don't fall into that category. And most doctors drink. A recent study of 417 UK doctors found that one in twenty doctors met the criteria for alcohol dependence and just over half binge drank on more than one occasion per week. I bet they don't get PN. IMO he/she knows nothing about B12D and is just making a wild guess at what is causing your PN.
Start B12 supplementation NOW before things get much worse.
Thanks Charks - yes - they all seem to not know much about B12 def and PA ....just the basics..and they get all scratchy when you try to engage and get a fix on the problem... being called over anxious led me to stop searching and getting the nerve damage.
I have undergone MRI scanning, colonoscopy and a gastroscopy, oh what fun ! The results show errosive gastritis, hiatus hernia, diverticular disease, Crohn's and an issue with my ilium ! I think I hit the jack pot.
I think you are absolutlty right when you say it starts in the gut.
Jillymo, Hi - i had the errosive gastritis and inflammed ilium. You are in the wars my lovely. - sendind well wishes - Just a shiny thing for you - with a steady and calimer diet my gastritis was under control without omeprozole ( it damages your kidneys long term ) I raised my bed 6" at the headend.. worked wonders.. Kx
Hi, I have been on lansoprazole for many years. I recently tried stopping them and were immediatly in trouble. I have tried all sorts of things with regard to gut health but cant seem to resolve my issues. At present I am waiting for a capsule swallow to identify something seen on a scan - but I have waited months. The medications I have to take for other another condition isn't helping with the crohns (Aspirin) for my sticky blood. I do have raised pillows which helps with the reflux but that has been better of late.
I have just started steriods for chronic inflammation god holly knows what side effects they will cause me. This old bod of mine seems to be giving up on me - I have a scan on my heart today for an enlarged aorta, isnt life just grand ?
Hi Jillymo... Sad to hear of your troubles lovely - but I can offer these suggestions that did work for me with the reflux. But i dont have Crohns myself, which i know is complex to treat and highly debilitating. Okay - firstly my dear, raise the head of the bed at least 6" - this tips your body up and keeps the reflux down. It really helped me. Secondly, dont eat ANYTHING after 7.30pm. Thirdly, try to sleep on your left side, i find it lessened the reflux - i dunno why - but a logged the effect over a year..
Fourthly, if you can take Gaviscon Advance ( to replace the Lanza ) - take a glug of that before you sleep.. That was my regime for the last two years - nothing changed over night tho. Finally, I found that when you come off Lanza - you do have to step down off it...over a couple of months or you get major reflux relapse ( like i did! ) and you have to keep to a very simple wholesome set of good foods, ideally NO alcohol.. and then something like Gaviscon to chemically neutralise the acidy reflux effect. I am sure you will have heard of some / all of this type of advice..and sorry for any presumption on my part. Just sharing some ideas that worked for me.
Hi Treesong2023 -I were prescribed the Gaviscon before being prescribed the Lansa, I will ask them to re-prescribe me. I am a left side sleeper so at least i'm doing something right. I havea divan bed so not really able to raise it because frightened I will break the base as I now have trouble getting on and off the damned thing. I rend to aim at it these days and shuffle across to the middle.
Thankfully I am not and never have been a drinker and I am also gluten free. My only vice is I do like a curry now and again such as a biryani. I do have live yogurt and kefir but now I am housebound I am not able to get out and choose my goods when shopping, it's now a case of having what is sent me. I have my last meal of the day at between 4 & 5 and thats me done for the day.
Should I come off the lanso slowly and maybe take every other day and wean of them ? If and when I get the capsule swallow over and done with then I can discuss an alternative to the lanso - but everything is so long winded with both my Gp and the consultant. My medication for my sticky blood one being aspirin is not helping with the crohns or errosive gastritis. In the early days they were prescribing me the un-coated aspirin which caused me a lot of damage. The NHS are determined to finish me off thats for sure.
Hi Jillymo... you cant beat a nice birayani... I would speak to you GP about the Lansa before you do anything. If you cant get to talk to a GP - just talk to 111 - tell them you issues. They make a report to your GP practice. I have found it gees up the GP a bit.
It all depends on how long you have been on them Jillymo - so be do careful and check.
I have a divan bed too and its seems fine with the angle, but i understand you worry. You could also just raise the mattress itself at the head end. I used to to do that before I bought the bed risers for the bed. That you can but them showed to me that lots of people do it.
Hi - I have been on Lansa for a good 15 years or more apparently to protect my stomach from the aspirin ! What a joke
I have tried to speak to my Gp several times explaining patients should'nt be prescribed them long term. The trouble I have is because I am somewhat complex they dont really know how to keep symptoms at bay because one thing will trigger another. It is now a constant battle. The gerd is much better than it used to be. When it was in full swing my o my I used to think I was going to draw my last breath. Cheese was the worst culprite so I now avoid.
It's all sent to try us but I have to admit it is now getting a struggle to cope with all the different illnesses. I think my humour pulls me through - so keep smilling. 😃
A long history of GERD and Helicobacter pylori ? How was this treated ? Long-term, Omeprazole can deplete B12. I'm thinking that this may be the problem or a part of it.
Yes Cherylclaire - I was put on high does Lanszerprole for over 8 months and then my kidneys and bloods were a total mess. I am certain this was another factor....stomach/GERD and Errorisve gastritis issues..then the lanza - then the B12 issues? = Peripheral Neuropathy ..
Some people who have PA test in the normal range on the B12 test. An experiment that would help you to see if you might have PA is to try taking daily sublingual 1000mcg B12 and see if that helps. A more ideal test is to have some every other day loading dose injections of B12. If these things improve your symptoms, I would just assume you have PA. This means you need life long supplementation of B12. Some people absorb enough from the sublingual B12. Others need injections. You could get tested more. But a better test to see if the B12 is the problem is just to take the B12 and see if you get better. For me it was a miracle drug. I went from sleeping 16 hours per day to being an energizer bunny. The sublingual B12 worked for me for awhile. But then I got tingly and painful toes that cleared up with B12 injections. That is enough evidence for me (and my doctor) that I have PA.
Hi Hockey, I send my thanks for your steers and i have some of those on the go now...
My my...I was pleased to hear your progress...well done you getting your body fix in!
I am doing 3mg SL B12 methyl / Adeno cobalmin liquid form in the morning before breakfast. Then I do 2mg Methyl only with the melty SL tablets at night. I am taking bioactive folic acid and iron every three days..Now, I am all aboard the PA / B12 Def boat believe you me! In fact, I didnt want to report on my progress too soon, being just 5 days into this B12 / Folic Acid treatment...But I am getting calmly pleased... For 2 mornings now i have woken up not already tired... My feet and hands didnt go all hot and cold on the last two nights in bed... and i had no night sweat..which happen most nights...
Today, I felt more like ...ME! ..talking the neighbours to death.. and I took a walk with the doggy i had not taken for over 4 years.. Now, if its a placebo effect i dont care !
So, I am not the Energiser bunny ..hahaha.. But some good signs i feel.. I am keeping a log of things to track energy/mood/exercise/ symptom change/stomach feel.. - to see how the liquid form does against the SL tablet. I have ordered Pascoes B12 Hydroxy Depot from ApoHealth... Are you using something similar..? Is there something better.. ? sending kind regards
WOW! It is so awesome to hear you are feeling so much better! I used sublingual supplements for many years before I needed to switch to injections. I am in Canada, and I can get Cyanocobalamin over the counter without a prescription from the pharmacy now that I need injections. What you need to know: if you have PA, it is a life long condition. It's not something you just get better from and then you can stop taking B12. It will be interesting to see if the injections help you more than the sublingual B12. If you don't, you can use the sublingual B12 until it stops working for you. For me, the sign it was not working was tingly and painful toes.
I'm over 73 years young, diabetic type 2, taking insulin, otherwise I feel fine health wise! I drink alcohol 2 peg daily with evening meal- Recently my feet shows swelling but no pain; I don't think its not the alcohol causes it, but could be the B12 level variations OR PN is due to HbA1c is out of control..... 😏 Any comment welcome !
I cant help on much, sorry - but swollen feet could have several causes. The weekly safe limit for drinking ( in the UK ) is 14 units a week.. I think thats about 9/10 medium glasses of 12% wine. Kind Regards
Hi and Thank You. I am doing Vit B Complex and Benfotiamine - taking no chances me! But very high MCV and very low Ferritin were the key indicators that i should have keep my focus on.
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- yes -changes have to be made ..and so, we are changed. I am v glad you have had some good recovery things... 
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