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-   -   What does it mean if the supplement regimes don't work? (https://www.neurotalk.org/peripheral-neuropathy/222893-mean-supplement-regimes-dont.html)

beatle 07-12-2015 06:03 PM

Quote:

Originally Posted by Eskiemom (Post 1154604)
I have not had any improvement like some have.
I've tried everything with no affect.

I've tried every supplement too. I've even gone off of them and didn't notice any difference but I take them anyway just in case. Or perhaps it's just so I can feel like I am doing something to help this horrid condition.

I was reading about neuropathy on a site where doctors weigh in and it was very discouraging. One says some laser treatment shows positive results, another says there are no studies to support it. One says narcotics are the most effective, another says they would never prescribe them. They contradict one another because there is no acceptable treatment protocol.

Symptom management and vitamin supplements are not enough. Diet and exercise are not enough. All of it combined is not enough.

Eskiemom 07-12-2015 06:21 PM

No statin drugs - ever.
Coq10 is from Andrew Lessman
I took the R-lipoic in the past. Several bottles of the same brand you recommend. I've ordered it again.

zkrp01 07-15-2015 07:01 PM

Politics, Religion & Supplements
 
Quote:

Originally Posted by Eskiemom (Post 1154657)
No statin drugs - ever.
Coq10 is from Andrew Lessman
I took the R-lipoic in the past. Several bottles of the same brand you recommend. I've ordered it again.

To each his own-- somebody famous said that. When I first started out, I wanted to get better and I mean yesterday!!! After a couple of years I have learned a lot from Mrs.D and I-we all owe her so much. If you have baseline numbers such as B-12, you know if you need to supplement or not. If you don't know if you need it or not, its akin to buying insurance. And everyone knows how rich Warren Buffet is. I will always have to supplement B-12 as I was deficient due to years of Metformin and I will continue both. My Endo put me on the CoQ-10, nuff said. He said also that I needed the Gelcap of Vitamin D. I have discontinued 5 or 6 others for a time and do not feel any different. But what if I am messing up???? You see my point? I will always read everything from Mrs.D but I might not take everything I used to in the beginning. I also had a Neuro tell me to stop taking Zinc as a supplement(I had read something on You-Tube)there is a zinc-copper ratio that has to be tested for. My B-12 went from 119 to over 900 and only then did I stop monthly injections and maintain with Foltanx. That was the only difinitive numbers that I knew of. All the rest were"insurance". As a child you didn't know if you are a conservative or a liberal-a Baptist or a Methodist. If you are just getting started with supplements you just don't know which ones are going to be, " your own".

mrsD 07-15-2015 07:04 PM

Well, the bottom line is.... if nothing works for you, then you may have a hereditary genetic form of PN.... CMT (Charcot Marie Tooth)

You can investigate testing with Athena labs... which is expensive, but it may provide an answer for you.

Kitt 07-15-2015 07:35 PM

One of many sites concerning Raynauds.

http://www.niams.nih.gov/health_info...aynauds_ff.asp

Another site for erythromelalgia.

https://rarediseases.org/rare-diseases/erythromelalgia/

jurgen975 07-15-2015 07:37 PM

I am also in doudt if my supplements work
I used to use acethyl L-carnitine and alpha lipioc acid 1600 mg &borage oil1300mg including Q10
Afterthat i used PEA and vitamine D 2000 iue for a period of maybe 1,5 mouths

Nowadays i use Curcubrain,R-lipioc acid Qunol Q10 and somethimes inositol.

I know its all trail and error but and especially if you have a toxic PN R-lipioc acid should be used including qunol q10.
But i wander if this is doing anything for me.
I didnt notice any real difference with al these supplements.

I could be wrong but pea and vit d could have made a minor minor difference but overall i reeally havet felt any BIG change when using all this stuf.
So what is the right stuff to use?????????????????????????????

Eskiemom 07-16-2015 04:15 PM

Quote:

Originally Posted by mrsD (Post 1155346)
Well, the bottom line is.... if nothing works for you, then you may have a hereditary genetic form of PN.... CMT (Charcot Marie Tooth)

You can investigate testing with Athena labs... which is expensive, but it may provide an answer for you.

Thanks.
I've asked five neuro's and my primary and they all say I don't have it.
My clinical exam is perfect. Strength, reflexes, feeling, etc.

Yet this afternoon, my right toe turned into a sparkler! And the symptoms travel up the entire inside of my right leg from great toe to top of inside thigh.
Rumbling twitching all over my legs.

I had testing by Athena Labs two years ago....those neuro's said they tested me for everything and all came back normal. I'll have to check if they tested for CMT.

Kitt 07-16-2015 04:43 PM

Check your Private Messages.

mrsD 07-16-2015 04:44 PM

Pain only in the big toe may be coming from compression higher up at the knee or spine. I dislocated my knee years ago and the pain went straight to my toe. The Chiro had me draw it on a human outline, in my information papers when I went there.

When she adjusted my knee... the toe pain was instantly gone.

But now when I get pain in my toe, I put a Lidoderm patch behind that knee and the pain goes away in the same fashion.
The magnesium lotion also works that way for me.
https://www.pinterest.com/pin/487162884665368556/

PN type pain can come from mechanical issues, compressions, or spinal compressions.

Eskiemom 07-18-2015 04:00 PM

Quote:

Originally Posted by mrsD (Post 1155346)
Well, the bottom line is.... if nothing works for you, then you may have a hereditary genetic form of PN.... CMT (Charcot Marie Tooth)

You can investigate testing with Athena labs... which is expensive, but it may provide an answer for you.

No CMT. I was tested for all variants and was negative.
It's progressing about two inches per week.


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