Hey Guys!


I was trying to find a fun forum where all the cool people hang out! Of course this is a pretty select club you have going here, you have to have something wrong with you to “belong.” So I tried my best, and after a lot of time and effort, succeeded in developing peripheral neuropathy! Hooray! Now I can hang out with you guys!


Hey, it's laugh or cry...


So about 3 months ago I started feeling fire/numbness in my feet, tell Dr. she's like “Meh, stop running so far/surfing in freezing water.” Ok... I'll totally do that (no I won't).

Then my fingers start to tingle. Dr says “You're probably just a weirdo, but we'll run some blood tests.”

Vitamins – ok
Fasting glucose – ok

Cool, I'm just nuts apparently.

Then my feet swell up and some hair falls off my legs. Awesome!

Dr runs glucose tolerance test which of course, is normal. Yay!

So after 3 months of getting the run around she's pretty certain it's neuropathy. Gives me a recommendation to a neurologist who tells me it will be 5 WEEKS!!!! Man... No one cares if you're in pain it seems.

So fast forward to today, it's getting worse, spread to my groin! This just gets better and better. So I'm only 37 and I'm going to go from being super fit surfer guy, to hobbling around in pain, possibly with ED, draggin around a pee bag. “Hey babe, wanna check out my bag?”

Oh, and I hear it can blind you as well! Neuropathy, the gift that keeps on giving! I'd celebrate with a beer or three, but oh yeah, I can't drink anymore...


So the questions:


I called the neuro yesterday, told them I was concerned that it was getting worse, and they told me in the politest possible way to F-off and wait my turn. After doing hours of research on this super awesome condition that we all share, I've learned that it's best to turn down pain meds until you really need them, and to find a Dr that specializes in neuropathy.

Should I wait the 2 weeks that are left? Is that pretty typical for neurologists to be backed up so far? Should I cancel and find one that specializes in Neuropathy? If so, how? Can anyone recommend a Dr in Socal? I'm in Orange County near the beach, but I'm willing to drive if it'll benefit me. I do have a good ppo so I can see anyone.

Pain: When the Dr said it would it would be 5 freaking weeks, I did TONS of research on pain management. So basically nothing works except for the hardcore stuff that knocks you out and destroys your internal organs... No thanks.

Medical marijuana is legal and accepted here, so I went down a couple weeks ago and got my card. For the most part it does help. I take a puff or two of a strong indica before bedtime only. It numbs my legs/hands and helps me sleep. Unfortunately, occasionally it seems to make my symptoms flare up. Sativas make me feel like I'm on fire.

Anyone here have any experience with mmj and circulation? I have swelling in my ankles, other parts. I'm VERY concerned about circulation. Anyone with circulation problems use it? Does it help or cause problems?

Here's what I've discovered so far about mmj taking into consideration ONLY credible studies, keeping biases in mind. To the mmj people it's a wonder plant that cures EVERYTHING, to uptight people it's simply evil and scary. BOO! Not a lot of helpful discussion on either side.

Pros :

-Peripheral Vasodilator – increases blood circulation (in most cases, see below)
-Lowers blood pressure
-Neuroprotectant
-Prevents diabetes in rats
-Lowers blood pressure in eyes potentially stopping diabetic retinopathy/glaucoma

Cons:

-While overall being a peripheral vasodilator, there have been studies showing contricting of small blood vessels in toes/fingers
-Study done in the UK showed constriction of blood vessels in brain
-Light use actually RAISED IQ 's up to 3 points, heavy use lowered by up to 5 which supposedly returned to normal after non-use, every day before bed would be considered heavy I'm sure
-Can be sprayed with harmful pesticides, probably not a concern if getting from an organic dispensary

So, is mmj a good or bad idea? I'm scared to keep using it, don't want to make my condition worse under any circumstances. I personally don't enjoy the high, but I'd rather take that than a med that will kill my liver/kidneys.

So main questions:

1.Should I find a diff doctor, or wait 2 weeks?
2.Is mmj a good or bad idea? My biggest concern is circulation.
3.I've been told that low blood sugar is healing to nerves, <100? True/False?

Thank you for reading my book. If you've made it this far, I'll happily buy you Guiness, ehh.. better make it a purple cow.

Any type of input at all is sincerely appreciated,

Thank you!

Well, I think you need more testing.

B12, and Vit D.

Heavy metals. Fasting INSULIN... low blood sugar will damage nerves as much as HIGH.

Perhaps genetic testing if all is normal with the above.

One cannot just jump to medical MJ... you need to find your cause. Without that, you will just progress!

Check out our subforum for dietary connections, RX drug connections and other resources. Thyroid testing, etc.

You are putting the cart before the horse. Looking for relief, without explanation. Patience here and tenacity are the traits you should cultivate now, IMO.

Welcome to NeuroTalk. There is homework here required for best results!

Appreciate the reply. Don't suppose you have any references for the above? Or can point me where to look?

Thanks

Well hello to you! Yes, you have certainly found where the 'COOL' people hang out!! And No, you don't have to 'pass' any sort of 'protocol initiation ritual' to 'belong' here! ....... This is a down to earth bunch of great folks who really care. Not only that, but there is a goldmine of incredible information on how to combat pain, how to help 'zero-in' on HOW you became afflicted with this wonderful condition..... and on and on.

So, please feel WELCOMED here!

The PN subforum listed under this forum is packed full of info in which very devoted folks here have painstakingly put their time and countless hours of research together for us to be able to easily access the most pertinent/valuable help aides in combating PN. It is a serious condition involving much frustration and even more frustrating trying to find a medical team willing/able to target the treatment suggestions that are available right here!
So, I am very happy for you that you've come to NT.
Yes, much homework needs to be done and I personally can't thank the team of folks enuf who devoted all their time in doing most of the necessary homework for us!!
Stick around and begin reading thru the valuable information that is available here.

Yes, MJ is talked about as well. If that is what you feel inclined to center in on, you can use the 'search' feature at the top of the page and type in key words to what you want to know. This will bring up posts from past discussions for you to read thru.
If I were you, I'd put that one on the 'back burner' for now and really delve into what PN is all about and become familiar with possible underlying causes.
Oh, how I only wish it were as simple as baking a batch of 'brownies' and being able to put pain behind me.....

Glad you're here!
You will be too!
Caring
Rae

Thank you for the warm welcome, you guys are awesome.

I have stopped taking the mmj until I see a neuro, paranoid it's doing more harm than good. But now I can't sleep and am pretty much miserable.

I've broken just about everything that a person can break, and the pain from that is a joke compared to the burning I feel. Ugh... how do you guys cope?

Hi! I have PN and some other issues and have found a wealth of information and compassion here... The thing I found with MJ is that is made my autonomic dysfunction much worse. Sometimes autonomic dysfunction goes along with PN as the autonomic nerves are part of the peripheral nervous system. That was my experience, yours might be different. My feeling is if it makes you feel better... although, only you will know that.

Also, I think that MJ increases BP. It may make one feel relaxed under optimum conditions, but I do think it tends to increase BP and heart rate both. Anyone know this to be fact?

Mere

It has been proven to dilate veins therefore lowering BP. Your heart rate increases to compensate (usually not an issue unless a brisk walk puts your heart at risk). That is one area that is absolutely accepted by the medical community. I did way too much research...

But if you say it makes your autonomic dysfunction worse, I'm not screwing around with that. I'll wait till I see the neuro.

Thank you so much for sharing that.

WHY? Because of all the good [as mmj] or bad [as in steroidal or epiliptic therapies] ANDTHAT IS ONE BIG UNIVERSE!
Thing is, first? GET A FRUITCAKE DIAGNOSIS! THEN get meds...do trial and error. and get FUNCTIONING! again.
HONESTLY! PN HURTS! A LOT! A HEAP Why not throw yourself into a vat of burning asphalt ? Yet, 99% of US do not? [Tho some seem to claim they have] And we get by. And we learn about what we HAVE and how to live with it....w/or w/o meds.
To be frank? You have to really get in tune and HONEST with yourself, before you go further? NOW is the time to do it, when being tested. Learn about the possibilities? And also the alternatives.
BTW? Don't ya know it takes 6 weeks to 5 months to get an appt w/a good NEURO? Get reading on prior posts here and also the 'stickies' at the top of the forum.
Come down to earth and learn reading past posts? About how to get diagnosed and treated! Don't expect coddling here? Read about Cycleops from the get go? And don't forget I always walk with a solid wood cane! - j
I am sorry I seem so crass? But, this crud at times IS CRASS! And, I've less patience that I've had in the past.
I truly would like you to be back, with some more coherent backgrounds and such? And I do think not only I but others would help you immensely. Maybe it was the MJ? - j

[QUOTE=Neuropathy_Hooray!;661307]Hey Guys!




Then my feet swell up and some hair falls off my legs.

*** Yeah, I noticed that as well. The pain can shoot up to 5 inches above my ankles and there is no hair south of that line (although since I had my glasses on when I applied the lidoderm patch to my big toe I noticed a few stragglers). Strange symptom (also strange to my neuro at the time who I have since fired).


















Medical marijuana is legal and accepted here, so I went down a couple weeks ago and got my card. For the most part it does help. I take a puff or two of a strong indica before bedtime only. It numbs my legs/hands and helps me sleep. Unfortunately, occasionally it seems to make my symptoms flare up. Sativas make me feel like I'm on fire.

*** Stay away from sativas. It took me about a year to find the right strain. I have a private grower who does it all for me. Mine is called "God", all indica. Lately I've tried MMJ in hash form using a vaporizor. I can get an instant 2 - 3 point drop, but also have to stay seated the first 20 minutes or so. When I say it took a year, that's about right. I must have tried 30 - 50 different varieties until I zeroed in on one.







Anyone here have any experience with mmj and circulation? I have swelling in my ankles, other parts. I'm VERY concerned about circulation. Anyone with circulation problems use it? Does it help or cause problems?

*** I noticed some swelling in my ankles a few months ago and began using compression stockings (knee-highs!!). They give me good relief until maybe 5 or 6 pm. I don't know if it is from MMJ. Hadn't heard that. However, do be aware that heavy smoking of MJ can give you man-boobs.





-Can be sprayed with harmful pesticides, probably not a concern if getting from an organic dispensary

*** Oregon allows a patient to grow their own or designate a specialized grower. The State will vote on dispensaries this fall... generally a good idea, especially for the patients over 70 or so or ones with mobility issues. I like having the intimate connection with the grower... for whom it is a form of service.





[COLOR="Blue"]1.Should I find a diff doctor, or wait 2 weeks?

*** I'm with Kaiser and will be firing my main provider (Julie in the thread about my Kaiser troubles) for the first time and shortly after that firing my neuro for the second time. Depending on your medical provider, you will find that most family practice/internal medicine folks are over-worked and will not have the updated information about PN. I heard a story about a member here who went through 9 neuros until s/he found the right one. You will have to be the insistent advocate for yourself through reading, reading, reading.


Cowboy

[QUOTE=dahlek;662009]


To be frank? You have to really get in tune and HONEST with yourself

*** I have revamped my entire diet and supplements since beginning this journey. I am taking MUCH better care of my body just so I will have more chances to hike in the Columbia Gorge with my wife during the rest of my years. I'm also providing some up-close support work for my elderly parents who struggle with a host of other physical problems. I cannot imagine what it would be like with PN, so I do what I can to change my relationship to my body.

*** Honesty. No more self-deceptive rationalization "I'll get in shape tomorrow"; "I'm in a hurry, one Big Mac can't hurt."

Cowboy