Just need opinions!!.please HELP
 

Hello
I'm still in the process for a formal diagnose..ive wrote my story back in February..anyway I'm 4 months into this.I have done nothing to warrant these kind of symptoms im a 30year old male with no previous medical conditions..ive had the usual work up mris blood test,nerve conduction test..my symptoms are just in my hands tingling/stinging but I also get this annoying twitching through out my body.Im on here because I've had a few periods of minimal symptoms and recently flares..i do think my symptoms have got a little bit better I think...Can someone please reasure me it's not doom and gloom like the internet says..my Neuro says "my symptoms will get better in time" as I'm fairly young.Just need some opinions

Your symptoms sound similar to mine, only mine are more profound in my feet and legs. My head is where I feel them second-most, and then my arms and hands.

I'm going on 5 years now, and the symptoms have not worsened. Consider taking high quality fish oil as Omega 3s are neuro-protective.

Also, check to see if you feel better when you consume a lot of water and are very hydrated.

Thank you for reply..yes I'm taking omega 3 fish oils with other supplements

This post have over 80+ views..but only one person has replied,this is supposed to be a support group surely someone with experience or even someone like me who's new to these symptoms can reply back..by helping each other May be we can get some relief

Have your Vitamin d and b12 levels been restored? I noticed in your original post your B12 was low, even though your doc says it's not, it is. At your age, it should be higher. You may want to list the supplements you are currently taking. Also, what nutritional testing did you have done other than Vitamin d and B12? What medications are you taking, both prescribed and OTC? Are you a vegetarian? A more complete picture of your situation can be helpful to the group and may prompt more suggestions.

Hi Marlene thanks for the reply...like I said in my orginal post they have said my B12 levels are normal..only vitamin D levels wer down I'm taking prescription vitD tabs I'm also not diabetic checked and all good...also I'm taking a complex B supplements omega3 fish oils,pregablin.No I'm not a vegetarian..i never catch colds or flu,this was so sudden and out of the blue...my nervous system went completely out of whack...will this ever get better??

A low normal b12 of 392 is suspect IMO. In light of the fact that you have symptoms and low normal B12, I would consider addressing it. Like I said, you are very young and should have a more optimal B12 level. Spend some time reading the B12 sticky posts at the top. B12 serum testing is probably the least effective way to test for B12 status. Looking at homocysteine and MMA would be a better indicator.

Regarding Vitamin D. Prescription Vitamin D is usually D2 and not an optimal form. D3 is better and can purchased over the counter. On a side note, we always take our D3 with K2 to help prevent the calcium from being misplaced.

I would look at adding in magnesium as well.


If you get a chance, watch this on B12. Diagnosing and Treating Vitamin B12 Deficiency - YouTube

I am currently on 20,000 D3 twice a week...I do think my B12 levels are low as my younger brother who’s 23 had a blood test recently and his levels are 780 compared to my 392..but any of the 3 neuros I have seen have not even considered this and said it’s fine...my next appointment is in July so I’m not sure what I should do in the meantime

Hi Shak2388.
First I don't have the same situation as you but I do share that I have no diagnosis and it's scary. Second I am glad you wrote about no responses just views. This forum used to be a very active one but from what I've seen it appears to ebb and flow over the years. I disappear for months at a time. Then there's the people who seem to just look for information and if the post doesn't give them that they move to the next. Regardless, I'm sorry more people haven't responded and I can certainly relate to what you wrote about that.

I just read your other 2 posts. One suggestion is start meditating to handle your stress. I'd also start keeping a journal. Write down the supplements you take. if you add a new one see how it effects you. Also your diet. Sugar, alcohol and caffeine seem to anger nerves and effect many members of the group. Gluten sometimes also. If you can find a pattern to your flares it would be great.

It is possible you had a severe reaction to something. I know a girl who got Ciguatera from eating spoiled fish. Her symptoms lasted 6 months and started like yours, although the ones you describe now are not the same as hers.

I hope this helps.

The short answer.....
 

You can restore B12 on your own. For most it's as simple as taking a separate bio-active B12 supplement like methyl B12. But it can also get complicated. I don't have the time right now to get into it but will post back.

In the meantime, look at your current B complex supplement to check what type of B12, folate and B6 are in it. For many, the least effect forms are the Cyno B12 and folic acid and pyridoxine.

Pinkynose's advice regarding record keeping is a good idea.

Thank you pinkynose for the info..and I totally agree with you on people commenting..yes I’ve tried to clean up my diet I don’t drink and have stopped smoking since February I don’t drink coffee so I’m giving my body the best chance to heal itself...I’ve read stories on here where peoples symptoms gradually get better over 6 months to a year so hopefully that will be me..as I’ve had this for nearly 5 months and it’s only been in the hands..it definitely did feel like a reaction to something.

Thank you for your help Marlene..I do have the B12 supplement which dissolves under the tounge,but I peferd the B complex,I might look into starting that again with the B complex...Just another question can my issue be brought on by using my IPad/phone all the time...radiation and all that,just a theory

you arent being ignored. if someone has nothing in common, to help or add they usually wont respond. traffic is way down on this site.

1) What form of B12 is your sublingual and what's the dosage? Take this on an empty stomach for better absorption.

2) Your B complex would be best if it contained the bio active forms. Methly B12, P5P form of B6 and methyl folate. These forms do not require you body to convert them to a usable form.

3) Absorption issues
The liver can store approximately a five year supply of B12. So by the time your B12 shows up as being low to low-normal, you've probably had some issue going on for awhile. It's important to look at digestive health.

Off the top of my head, here are some reasons for low B12 absorption:
A - you lack intrinsic factor. Either due to damage to the lining of stomach or a possible auto-immune issue which destroys it.

B - Over growth of the wrong kind of gut bacteria, candida as well as h.pylori. The bad stuff eats up B12 so it gets to it before you do and compromise the gut lining.

C - You do not have sufficient HCI (stomach acid) to break down your food. People on acid reflux drugs will have an issue at some point. I know this sounds counter-intuitive, but alternative doctors will treat heart burn and acid reflux with HCI. You need B1, zinc and iodine to make stomach acid. If you don't have adequate stomach acid, you won't absorb zinc either.

D - Digestive enzymes produced by the pancreas are insufficient. Raw foods can help because they contain enzymes that will help break down food.

E - Celiacs disease/gluten intolerance will destroy the lining of gut and small intestine causing all kinds of issues as well as destroy the cell responsible for making intrinsic factor. And as you know, wheat and grain are inflammatory to many. Most people won't test positive for Celiac but benefit greatly when stopping gluten. It can a long time to heal from this.

F - Antibiotic use, aspirin, NSAIDs, Acid reflux drugs and alcohol abuse can mess things up.

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Regarding your IPAD/PHONE. The more common problem with these devices is related to structure. How you hold your neck and head can cause tension in the muscles which can lead to nerve issues. Pay attention to your posture.

You may want to try epson salt bath or hand soak. Espom salt contains magnesium and is very relaxing. There are also Magnesium creams you can try on the back of your neck/shoulders.

It can take months to restore your B12 and for your nerves to recover. So you are on the right track by cleaning up your diet and it's great that you have stopped smoking.

One last question....did they check your iron?

Ok this is making some sense now...as I had been on lansoprazole for quite a few years..its only when my wife blame my symptoms on the anti acids I have weaned off and only take it when my acid reflux is really troublesome.Again I will come back to my point the 2 Neuros I have seen on the NHS have not made a connection to this.

Ok this is making some sense now...as I had been on lansoprazole for quite a few years..its only when my wife blamed my symptoms on the anti acids I have weaned off and only take it when my acid reflux is really troublesome.Again I will come back to my point the 2 Neuros I have seen on the NHS have not made a connection to this...i have had a battery of blood tests so I'm assuming my iron was checked

We've found that it's always a good idea to get copies of your lab reports. That way you can see first hand what was tested and the results. You'd be surprised at what can get missed. And you can monitor trends overtime. Blood work is just a snap shot in time and can be misleading if it's off. And most doctors do not have extensive backgrounds in nutrition so you do have to advocate for yourself.

Its great your wife picked up on the lansoprazole adverse effect issue. I would suggest working on finding out what's causing the tummy troubles. So much of your health is connected to your digestion.

I managed to get a cancellation appointment for Thursday it’s the best hospital in the uk based in central London,my initial appointment was in July..hopefully they will have more capable consultants than the previous I’ve seen.

Keep in mind that if they test for B12 again, it could be falsely elevated since you are taking supplements. Most feel it's best to stop all supplements 4 -7 days prior to testing to get a more accurate read.

OP: For whatever it's worth, I didn't read IF you know what caused your issues.. A good friend has dealt with ideopathic so says for her doctor, but she's taken statins, had a lot of skin cancers burned and ended up with a lot of neuropathy. She took all the drugs and finally is off most and taking Grape Seed Extract now maybe 7 yrs or so, I've been taking it 23 yrs and she's feeling very improved...still nerve pain but a lot more tolerable.

I deal with some nerve damage now from arthritic knee issues and infection I went thru and so it's hit me. So so many with nerve damage/pains and so few know about grape seed extract and how it can help with this damage. At least 200mg daily and some times more and you can do your own research on nerve damage and grape seed extract as you'll find a lot.

I managed to get all by blood test results which I had over the last few months..I noticed my ESR levels are 45, the range should be between 0-10,this has slowly been climbing for the last few years..is this a cause for concern

This is a test for inflammation and there are things that can effect results like anemia. I would think your doctor would pay some attention to this. On its own it doesn’t give you a diagnosis but it may help your doctor to pursue tests in that direction. It’s not a cause for concern, just information. I think the more data you can get the better chance you have of finding a cause. :)

Everything else is fine just my ESR and CRP is on the high end of the range 5(noraml range between 0-5)is this something I should mention to my GP to investigate?

I would. In my experience most doctors aren’t concerned if you're in range. I happen to disagree with that practice. Regardless, it wouldn’t hurt to ask even if it’s just for your piece of mind. There are others in this group that would know this answer better then me. Perhaps one will jump in. :)