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Living with Polyneuropathy CIDP, GBS, & CMT

Do vitamins help


#41

Thank you. Yes the doctor horrible, I filed a complaint. My dads doctor from Kaiser knew about GBS. The doctor I saw wanted to do momma gram pap, tested me aides hep c b. said my kidneys bad, blood pressure high, oh then stop eatting red meat fatty foods which I don’t. Thank you, and good luck to you. It’s just hard when active all your life. I was in law enforment for 2o years just retired in match. Then ended up with this GBS


#42

Hang in there Tally, this disease is hard, but you can make a come back with hard work. Good for you that you are researching and standing up for yourself on the medical front. Does sound like you need new doctor.


#43


Yes...I was prescribed 10mg to start, taken at night time, and advised to take for 3-5 days. If no results with 10 mg after 3-5 days, then up it to 20mg per night. Advised to continue this regime, but not to exceed 100mg per night. I never had to go beyond 60mg. I am 5ft 3, and at the time weighed 150. Cymbalta was not the answer as it gave me anxiety attacks, so I was most thankful for the Nortriptyline/ Elavil.
larry g said:

Hi: Do you recall the dosage you took of the nortriptyline?

Larry



Tweets said:

Greetings friend. I can tell you that my neuro told me during recovery that vitamins that support the CNS such as fish oil has been known to be beneficial, and my way of thinking was I had everything to gain and nothing to lose by taking it, so I did. I also took other vitamins and supplements as well.

As far as the prickly pin feeling in your extremities, prayers for you my friend as I have not forgotten how uncomfortable and miserable that pain was. My rehab doctor tried using Cymbalta an antidepressant medicine, and that threw me into anxiety attacks (a known side effect), so that was not an option. Anxiety attacks are no fun, and even more difficult to endure when you are unable to get up and move around. When I told my neuro doc what rehab doc tried (Cymbalta), neuro doc suggested and prescribed another older antidepressant medicine called Nortriptyline/Elavil, and for me, it worked wonders and within 3 days, the prickly pin feeling had just about completely subsided, and within a week or two was completely gone.

Holding you in thought and sending healing prayers your way.


#44

Hi: Thank you for that info. I am taking 20 mgs a day & will go to 25 tonight, but a friend told me he was on Cymbalta & it had strong sexual side-effects. I am afraid that the nortriptyline will have those same effects, the literature does mention those side effects for nortriptyline also. So far the 20mgs is having no effect on the burning sensation.

Thank you,

Larry

Tweets said:


Yes...I was prescribed 10mg to start, taken at night time, and advised to take for 3-5 days. If no results with 10 mg after 3-5 days, then up it to 20mg per night. Advised to continue this regime, but not to exceed 100mg per night. I never had to go beyond 60mg. I am 5ft 3, and at the time weighed 150. Cymbalta was not the answer as it gave me anxiety attacks, so I was most thankful for the Nortriptyline/ Elavil.
larry g said:

Hi: Do you recall the dosage you took of the nortriptyline?

Larry



Tweets said:

Greetings friend. I can tell you that my neuro told me during recovery that vitamins that support the CNS such as fish oil has been known to be beneficial, and my way of thinking was I had everything to gain and nothing to lose by taking it, so I did. I also took other vitamins and supplements as well.

As far as the prickly pin feeling in your extremities, prayers for you my friend as I have not forgotten how uncomfortable and miserable that pain was. My rehab doctor tried using Cymbalta an antidepressant medicine, and that threw me into anxiety attacks (a known side effect), so that was not an option. Anxiety attacks are no fun, and even more difficult to endure when you are unable to get up and move around. When I told my neuro doc what rehab doc tried (Cymbalta), neuro doc suggested and prescribed another older antidepressant medicine called Nortriptyline/Elavil, and for me, it worked wonders and within 3 days, the prickly pin feeling had just about completely subsided, and within a week or two was completely gone.

Holding you in thought and sending healing prayers your way.


#45

Hi Gayleen,
I can tell you that for me vitamins were a lifesaver. On my path of self diagnoses I tried a great deal of natural remedies, and I can honestly say that taking Magnesium and B12 was the best thing that I did in the early stages. Magnesium helps with the muscle pain and stiffness (Top athletes take magnesium to help their muscles heal faster) whilst the b12 helps support healthy nerves and energy.

I could certainly feel the difference on days i didn’t take my supplements, and in the early days weaning off the vitamins was the only gauge i had i was getting better. I started by taking them every day, then eventually every second day, then once or twice per week. Only after realising I could make it two days without them did i see that i was making improvements!

Not only that but for me it felt like i was doing something useful, like i was taking back some control if that makes sense? I can’t recommend you give these vitamins a try enough, hey if they don’t help you what have you lost?


#46

All I take are vitamans. No meds. I have had GBS since May 2014. My hands are the worst and I wear pressure gloves at night


#47

Thank you so much, I will try magnesium and B12, what a relief to hear something helps, you are a life saver. I’ll let you know how I fair. Have a great day !



Nojabold said:

Hi Gayleen,
I can tell you that for me vitamins were a lifesaver. On my path of self diagnoses I tried a great deal of natural remedies, and I can honestly say that taking Magnesium and B12 was the best thing that I did in the early stages. Magnesium helps with the muscle pain and stiffness (Top athletes take magnesium to help their muscles heal faster) whilst the b12 helps support healthy nerves and energy.



I could certainly feel the difference on days i didn’t take my supplements, and in the early days weaning off the vitamins was the only gauge i had i was getting better. I started by taking them every day, then eventually every second day, then once or twice per week. Only after realising I could make it two days without them did i see that i was making improvements!



Not only that but for me it felt like i was doing something useful, like i was taking back some control if that makes sense? I can’t recommend you give these vitamins a try enough, hey if they don’t help you what have you lost?

#48

Pressure gloves are a great idea at night, thank you!



Tally said:

All I take are vitamans. No meds. I have had GBS since May 2014. My hands are the worst and I wear pressure gloves at night

#49

Sam-E, you'd be surprised...


#50

Iam taking vitamans. Iam not sure yet if helping, but it’s better then nothingness:)


#51

Better then nothing :slight_smile:


#52

Thank you,I am taking Vit C,D,B and omega 3’s too, figure it can only help.



Tally said:

Iam taking vitamans. Iam not sure yet if helping, but it’s better then nothingness:)

#53

My daughter had GBS in 2000 she still has a little tingling in her left hand and left foot when she gets over tired nothing seems to help her with this.


#54

you should really give SAM-E a try, I think it was better than fish oil


#55

Thank you, I will, great advice



smitty said:

you should really give SAM-E a try, I think it was better than fish oil


#56

I can give the name of vitamans iam taking. One is for diabetics. Said to help feet and hands, also for swelling take turmics


#57

Yes, I’d like to know about the diabetic one as I know nerve pain is also part of that, thank you



Tally said:

I can give the name of vitamans iam taking. One is for diabetics. Said to help feet and hands, also for swelling take turmics

#58

Hello gayleen. So I take turmeric supreme for inflammatory. Swelling legs and hands. It’s called Gaia herbs. Then d also.n then nerve support it’s wellness support network. The big one is the b12 butit has to be methyl cobalamin b12. Hope ths helps if you need anything else let me know. I wear compressor gloves to bed I rub olive oil with Tymem on my hands first :slight_smile:




Gayleen said:

Yes, I’d like to know about the diabetic one as I know nerve pain is also part of that, thank you


Tally said:
I can give the name of vitamans iam taking. One is for diabetics. Said to help feet and hands, also for swelling take turmics

#59

Thank you so much Tally, what a big help. Sending healing thoughts and prayers along with thanks your way.



Tally said:

Hello gayleen. So I take turmeric supreme for inflammatory. Swelling legs and hands. It’s called Gaia herbs. Then d also.n then nerve support it’s wellness support network. The big one is the b12 butit has to be methyl cobalamin b12. Hope ths helps if you need anything else let me know. I wear compressor gloves to bed I rub olive oil with Tymem on my hands first :slight_smile:




Gayleen said:
Yes, I’d like to know about the diabetic one as I know nerve pain is also part of that, thank you

Tally said:
I can give the name of vitamans iam taking. One is for diabetics. Said to help feet and hands, also for swelling take turmics

#60

Gayleen said:

Thank you so much Tally, what a big help. Sending healing thoughts and prayers along with thanks your way.


Tally said:
Hello gayleen. So I take turmeric supreme for inflammatory. Swelling legs and hands. It’s called Gaia herbs. Then d also.n then nerve support it’s wellness support network. The big one is the b12 butit has to be methyl cobalamin b12. Hope ths helps if you need anything else let me know. I wear compressor gloves to bed I rub olive oil with Tymem on my hands first :slight_smile:



Gayleen said:
Yes, I’d like to know about the diabetic one as I know nerve pain is also part of that, thank you

Tally said:
I can give the name of vitamans iam taking. One is for diabetics. Said to help feet and hands, also for swelling take turmics