Getting rid of my neuropathic pains, my attempt

[Stillgoing]

Hi all.

So after living with functional ME for 15 years I had a major setback.

I have now developed bad tingling, prickling, electric shocks, crawling, pinching. This is mainly in my hands and feet but also spreads other places. My energy level is lower than before and I have stopped work to get some rest.

My general blood work is fine, (magnesium, b12, iron ok) although I had a slightly raised white blood cell count. I dont have the money to get lots of expensive tests.

I have been taking vit d 1000, vit c 1000, vit a, vit e, selenium, magnesium, omega 3 1000, and high strength vit b complex for 4 weeks with not benefit.

I have decided to try to beat it with vit b12 fnow

Yesterday I started lingual 2000 vit b12 (cyanocobalamin) for now and stopped the b complex.

I have ordered Jarrow Methylb12 for next week... although on this forum I have discovered that it isnt rated too highly now. However in UK I am not sure what options I have.

I will get some potassium today.

......

For future I have alpha lipoic acid
plus folinic acid, and methylfolate for possible methylation

Anyone got any advice.???. I want to keep things simple at the moment

Anyway this is my diary... it may help someone someday.

Thanks

Matt

 

[heapsreal]

neuronten/gabapentine works for me. I havent found anything natural that hekps this nerve pain unfortunately,

cheers!!!

 

[Stillgoing]

I have some neurontin but I dont want to take it yet.

Thanks to SallyBlossoms for some info.

My plan now is

Step 1 - Magnesium plus methylB12 1000 (increase slowly)
Step 2 - Add Benfotiamine 150 (increase slowly)
Step 3 - Add Alpha Lipoic Acid 250
Step 4 - Consider adding folinic acid and methyltetrahydrofolate, possible methylation.

Hopefully this will increase my energy and rid myself of these stupid pains.
I will ask my doctor if he is willing to give me any of the above on prescription but not sure if he can/will. In UK by the way.

M

 

[heapsreal]

mucuna dopa has helped me with muscle pain as i think many of us have low dopamine as a cause of some of these issues.

 

[Stillgoing]

Cheers I'll take a look at that

 

[adreno]

There can be so many reasons for this. How do your electrolytes and hormones look like?

 

[PhoenixBurger]

Please keep in mind - if your B complex contains high dose B6 ... this can and does cause nerve damage for many people. After prolonged periods of time. Everyone loves their B complex but very few are aware of this.

 

[Stillgoing]

Thanks,

I only became recently aware of this. My supplement had B6 700% RDA. I was taking it for almost 3 months so I wont be taking it again. Hopefully that will aid my recovery also.

 

[Stillgoing]

Day 3 of Alpha Lip Acid 2x250
Day 3 of Methycobalamin 4000 + 2000 cyno
Day 3 of Methyfolate 400 mcg
I have noticed a couple of subtle improvements - in a nerve in left foot and ankle.
Tingling is still there, but havent slept well, and done a lot in last few days.
Energy is better.
Eating plenty of bananas and dried apricots for potassium .
Looking through my blood test results today, as I only just got them from Doc.
The B12 test result was 300. In the range of 200-900 seems on the lower side of fine. I have a high MCV, which increased from 100 to 102.7 in 6 weeks, slightly high MCH of 33.6 and a normal MCHC which decreased from 34 to 32.7 in 6 weeks.
I think these may be caused by pernicious anaemia/ b12 deficiency... I think. So I am definitely sticking to my Methylb12

 

[Stillgoing]

Day 10 ALA 1 or 2 x 250 (took some days off to see if my sleep improved)
Day 8 Benfotiamine 2 x 150mg
Day 3 Enzymatic Therapy B12 (3000, 2 hours)
Day 2 Solgar Folate 400
Day 2 Magnesium Malate

So i finally have the good B12 (Enzymatic) and the Solgar Folate (and some Mag Malate)
My sleep has still been pretty bad, and spent 8 hours on my feet the other day so difficult to tell what effects are due to what.
Pains in feet and hands still pretty bad. May have worsened due to B12 startup and a very hectic 2 weeks. Probably a bit overloaded with supplements. Still very cold hands and feet (the cold feet actually mask the paresthesias there). Energy is down a bit.

Nothing great to report yet.

 

[shoponl]

Hi Stillgoing,

I don't have ME/CFS but have had paresthesias for over a decade.

Calcium, magnesium, and potassium have been helpful for me. I also take three kinds of B12 + methylfolate, a multimineral, vit d, vit C, tyrosine, and assorted other supplements.

This week I'm trying ALA.

Have you improved since last week?

~judi

 

[shoponl]

Forgot to mention--

I also have normal lab results (low normal).

And I had a cold right hand and post-extertional fatigue, but Tyrosine fixes both (temporarily) so they aren't so much of a problem for me now. It was a very good day when I found Tyrosine.

Do you have any genetic data? I think it can be useful-- I found Tyrosine after learning I had a mutation on GCH1, and knowing about my MTHFR mutation and methylation has given me a general boost.

~judi

 

[Lynne B]

Hi, Stillgoing, Like Heapsreal, Neurontin works for me. I've been using it less than a week but I'm sleeping well and waking up happy! Woohoo! I actually slept eight hours straight the first night with no disturbances due to feet or leg problems. The only downside is constipation but I think I can get around that with prunes and so on. Don't know if it can help with all the pain yet but I guess I'll find out. cheers, Lynne

 

[Stillgoing]

Hi Lynne and shoponl.

This is my progress

Day 19 of ALA (Day4 2x250)
Day 17 Benfotiamine (Day5 4 x150mg)
Day 12 Enzy took 3000 in morning- 2 hours.(plus 2 jar pm)
Day 11 of Solgar Methyfolate 400 mcg (day 1 2x 1)
Day 11 Magnesium Malate 3x1

In addition for last 10 days increased to 3000 vit c, 3000 omega 3 and 2000 vit d.

Had a good period of sleep for almost a week.. things seemed to be improving but bad sleep for one night and almost as bad as ever. I'm sticking with it though. My energy is definitely better, and for 4 days my paresthesias were significantly better. .Will ask doctor tomorrow for some B12 injections (hydro), he should say yes as I think my results and symptoms warrant it.

Feeling a bit low as pain today has been satanic...Still early days

Fingers crossed.. as ever

 

[Stillgoing]

Forgot to mention--

I also have normal lab results (low normal).

And I had a cold right hand and post-extertional fatigue, but Tyrosine fixes both (temporarily) so they aren't so much of a problem for me now. It was a very good day when I found Tyrosine.

Do you have any genetic data? I think it can be useful-- I found Tyrosine after learning I had a mutation on GCH1, and knowing about my MTHFR mutation and methylation has given me a general boost.

~judi

I'd love to get some genetic data but don't think I can afford it right now

 

[Stillgoing]

Hi, Stillgoing, Like Heapsreal, Neurontin works for me. I've been using it less than a week but I'm sleeping well and waking up happy! Woohoo! I actually slept eight hours straight the first night with no disturbances due to feet or leg problems. The only downside is constipation but I think I can get around that with prunes and so on. Don't know if it can help with all the pain yet but I guess I'll find out. cheers, Lynne

I still hoping I can beat these paresthesia without Neurontin... .... but I have Neurontin still hanging around in the cupboard....... waiting for me....

 

[shoponl]

I'd love to get some genetic data but don't think I can afford it right now

I hear you. :-\ Supplements and everything are so expensive. Heck, food is so expensive.

Anyway, just in case you hadn't heard, 23andme is now $99 + shipping: https://www.23andme.com/
Or free if you fall into one of their research groups (African Americans, Parkinson's patients, MPN patients, Sarcoma patients): https://www.23andme.com/research . One of my friends has Parkinson's, so hers was free.

~judi

 

[shoponl]

Not to hijack your thread, but what has been your experience with ALA? This is my second day on it-- I've had great energy but am getting a persistent headache. Thinking of lowering my dose... I've been taking 50 mg every four hours or so, for 550-600mg per day.

For the last two months I've been taking Thorne Neurochondria, which contains 120mg of r-lipoic acid (equivalent to 240mg ALA) so I thought it would be okay to jump up to the higher daily dose if I spread it out (ala the Cutler protocol).

BTW, Thorne Neurochondria is a good overall supplement for paresthesia-- it made my tingles more diffuse and lighter-- but is expensive so I don't want to keep taking it forever. http://www.thorne.com/media/pdfs/NeurochondriaSS10-10.pdf

~judi

 

[Stillgoing]

Dont worry, you aren't hijacking my thread... anyway my thread is pretty dull.. so more hijacking the better.

ALA also gave me a bit of a headache at first, but it passed. I should take it in smaller doses more often also.

Thorne looks handy, as in it is just one tablet... but pricey...

 

[shoponl]

I was scared off by the headache, so I dropped it.

Also it made my legs feel numb-- an alarming development! I mostly just have tingles not numbness; although my legs fall asleep easily when sitting or cross-legged, they always wake up quickly when I walk around. I noticed that the two days I was on ALA, my legs were oddly slow to wake up. My right leg is still a teeny bit numb (weak knee) now. I was worried that things would progress in a bad way if I stayed on ALA.

Apparently ALA is known for moving stored mercury around, so maybe I have mercury problems (?). With that in mind, my next experiment will be with Chris Shade's Intestinal Metal Detox (IMD). It's supposed to trap and move mercury out of the system.