Baffled and : For a while now(years) I... - Neuropathy Support

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Baffled and

3dUSA profile image
11 Replies

For a while now(years) I been dealing with tingling, numbness in my toes and I always got the brush off or say we'll wait to see if you have the symptoms in the warm weather. How stupid can they be! 

Well, the doctor I have now, sent me to a specialist.  My appt was yesterday. He shocked me into normality and back. (LOL) 

He said I have neuropathy in both feet, that I will always have it until I am 100, and there is nothing he can do. Is that true? Could a TENS help? 

He also said that it could be from having hypothyroid or no thyroids(from cancer).  He called it Central Neuropathy. I can't find anything on it. Do you have any ideas?

Please help me unravel this mystery. 

Thank you,

SebbyBaby🐺

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3dUSA profile image
3dUSA
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11 Replies
jazzmin profile image
jazzmin

Have you taken any floraquinalone antobiotics i.e ciprofloxacin, neurofloxacin, or moxifloxacin, these antibiotics have the capability of triggering neuropathy in some people, cheers

3dUSA profile image
3dUSA in reply to jazzmin

He said he didn't want to give me medicine because it doesn't hurt and it only tingles and numbs, swells up(I hate it badly). I will ask my PCP on the 19th of May, if taking a med would improve it. I trust him much more then the specialist. I know he say that it is up to me with all the med I take so far, if I want to add one more to my medicine cocktail🍹. (When I walk I rattle💊!)

Hey thank you, Jazzmin, for responding. You just don't know how that means to me. 

What do you think about the EMS or TENS unit instead of med?

3DUSA😻

Dianna👼

in reply to 3dUSA

Metanx is a prescription medical food which has been clinically shown to help peripheral neuropathy. No side effects, except cost in US. You can Google their website for details.

3dUSA profile image
3dUSA

It is about $130.00 or more. Wow, wonder if my insurance pay for it! Never know with insurance in the US. 

Couldn't I take the same supplements that are in the Metanx? NO, NEVER MIND! I wouldn't want to take all those extras.  

Is there any medicines that could help? Or you recommended? 

A relative buys the components and feels it works for him, but I do better on the name brand. Probably cheapest in US is 90 day supply from Brand Direct Health Pharmacy, look online, you need prescription faxed or mailed in, they are easy to work with, ends up about $60/month, can use Health Savings Account or Flex Spending. The usual dose is 2 pills per day. Several times I have decreased to 1 pill per day and the severe feet and lower leg pain quickly returned. But like any other treatment, results vary.

3dUSA profile image
3dUSA

I have had neuropathy for a couple years now. My Mom said that my Grandma had it also. Could it be hereditary?

Just a thought!

Yah, I will look more into Metanx.

Thank you, 

 3dUSA 🎁                                                                                                                                       Dianna🐸

jazzmin profile image
jazzmin

Your Grandmother could have what they called flobitus or what now is called deep vein thrombosis, you may want to ask your Doctor is this could be your problem, cheers

3dUSA profile image
3dUSA in reply to jazzmin

Actually, I was checked in 2005 because my Gyne was suppose to do a DnC and rectal repair and could because she said that during the DnC that there was a problem with my blood. She wanted me to go to a hematologic before I get the rectal repair. 

The hematology doctor said it was factor 5. I used to get vit. B-12 shots and take baby asprin still. My PCP now questioned why I take baby asprin. I told him about the factor 5. He tested me and the results were negetive, I didn't have no signs of it. Go figure!

It is on both sides of my family. My Grandma(maternal) and My Dad had blood problems(not sure exactly what it was).

I don't know how at one time I had factor 5 and the next none.😕

Thank you Jazzmin,

3dUSA 😇

jazzmin profile image
jazzmin in reply to 3dUSA

Your welcome cheers

melonasia profile image
melonasia

I haven't heard the term central neuropathy as my understanding of the disease is that it is one of the peripheral nervous system, as opposed to the central nervous, which is made up of the brain and spinal cord.  

I think what he may have been trying to say is that there is really no proven cure or treatment of neuropathy, a frustrating thing for both patients and doctors.  If you don't  have pain associated with the tingling and numbness, consider that it could get worse and include pain.  I have it in both feet and rather severe pain, for which some meds offer a reduction in pain, though not an elimination of it.  It is very troubling to have what you do, I don't  mean to imply that it's not.

For me distraction is my best antidote, but even that isn't an all the time thing. Good luck to you, I know it's very troubling at best.

3dUSA profile image
3dUSA in reply to melonasia

The doctor was a joke. He gave me half _ss answers. He said that it won't get worse. Apparently, he has no idea what he is talking about if he saying that is a central neuropathy and that it has nothing to do with my spine or the brain. I have lower back pain and again he said it has nothing to do with that. 

I am fustrated. I am going to see what my PCP has to say on the 19th of May. If I have too, I will go to another neuropathy specialist in the area. 

Thank you! I definitely appreciate your opinions and support.

Dianna

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