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Living with Polyneuropathy CIDP, GBS, & CMT

Do vitamins help


#21

I have been taking supplements throughout my recovery. I have been taking liquid vitamin d, b-12, multivitamin, omega 3, n-acetyl-l-carnitine and lipoic acid. I had quite severe numbness/pins and needles in my feet. I was diagnosed in April 2014, and though my feet aren't completely normal yet, they are not painful at all and I think it will be just a month or two more before they are back to normal. I started weening myself off of gabapentin when I returned home, and while I found the three days after a decrease very uncomfortable, my feet ended up feeling better after each decrease. I can't say for sure that the vitamins make a difference because I don't know what would have happened if I hadn't taken them, but I'm four months since my hospitalization and feeling very good. I think the most important ones for nerves are vitamin d, b-12 and omega 3. I take the vitamin d and omega 3 in liquid form as the dosage I take is much higher than a single pill.


#22

Thank you so much Kimberley, I want to ditch the gabbapentin and will try that vitamin combination instead, very encouraging! I appreciate your feedback



Kimberly said:

I have been taking supplements throughout my recovery. I have been taking liquid vitamin d, b-12, multivitamin, omega 3, n-acetyl-l-carnitine and lipoic acid. I had quite severe numbness/pins and needles in my feet. I was diagnosed in April 2014, and though my feet aren’t completely normal yet, they are not painful at all and I think it will be just a month or two more before they are back to normal. I started weening myself off of gabapentin when I returned home, and while I found the three days after a decrease very uncomfortable, my feet ended up feeling better after each decrease. I can’t say for sure that the vitamins make a difference because I don’t know what would have happened if I hadn’t taken them, but I’m four months since my hospitalization and feeling very good. I think the most important ones for nerves are vitamin d, b-12 and omega 3. I take the vitamin d and omega 3 in liquid form as the dosage I take is much higher than a single pill.


#23

Hi Kimberly :

I also entered the hospital on 4/11/14 & have the pins, needles, burning & numbness in my arms & lower legs just like Gayleen. Sounds like you luckily have a very mild case. Do you have any muscle weakness? Are you going to physical Therapy? I am going to lower the gabapentin, I am at 3600mgs a day & still have arm & leg pain.

Kimberly said:

I have been taking supplements throughout my recovery. I have been taking liquid vitamin d, b-12, multivitamin, omega 3, n-acetyl-l-carnitine and lipoic acid. I had quite severe numbness/pins and needles in my feet. I was diagnosed in April 2014, and though my feet aren't completely normal yet, they are not painful at all and I think it will be just a month or two more before they are back to normal. I started weening myself off of gabapentin when I returned home, and while I found the three days after a decrease very uncomfortable, my feet ended up feeling better after each decrease. I can't say for sure that the vitamins make a difference because I don't know what would have happened if I hadn't taken them, but I'm four months since my hospitalization and feeling very good. I think the most important ones for nerves are vitamin d, b-12 and omega 3. I take the vitamin d and omega 3 in liquid form as the dosage I take is much higher than a single pill.


#24

I'm not exactly sure where I fall in the spectrum of GBS severity, but I'm guessing somewhere in the middle. Here's my story.


#25

Hi Gayleen: Does the Fentenal patch make you tired? I am just increasing my Butrans patch from 10 to 20 mgs. I asked my doctor about fentenal & she said it is stronger than the Butrans patch. Did you read how Kimberly dropped the gabapentin all the way down & she is doing fine. I am very confused about what to do. Did you ask if your doctor (neurologist?)if he or she ever had any gbs patients before you, mine did not have any & that makes me less confident in her.

larry g said:

You are the first person that described my symptoms to a "t". I just got to this dosage of gabapentin & I am a little tired. I am going to stay at this dose for a few days & if I have no relief, then I will drop the dosage. Currently it is not helping much. I am on a mild pain patch, which the neurologist doubled the dose of today. Does the fentenal make you drowsy? Do you feel it is helping with the burning sensation? I take Vicodin when it is bad & it helps a little some of the time.

Gayleen said:

I forgot about the fentenal patches that I also use for pain along with the rest of the meds

Gayleen said:
No just two weeks now at home after that hospital stay Larry. Your dose of Gabapenten was too high for me as it made me too drowsy -I take. 2700 plus the 2 Tylenol
It was scary to hear that Lisarocks66 posted above still suffers after 30 years! Yikes definitely not I want, hope there are answers out there

larry g said:

Hi Gayleen: Have you been out of the hospital for 3 months? How much Gabapentin are you taking? How long have you had these symptoms? No one can tell how long these symptoms will last. I have asked doctors for an average length of time & cannot get an answer other than everyone is different.

Larry


#26

Thanks for your feedback Larry, I am pretty much on my own medication wise as none of the Dr’s know anything about GB and have seen no previous GB patients. My goal is to wean myself off all meds on my own starting with the patch - I don’t think that is making me tired, I believe it is the GABA


larry g said:

Hi Gayleen: Does the Fentenal patch make you tired? I am just increasing my Butrans patch from 10 to 20 mgs. I asked my doctor about fentenal & she said it is stronger than the Butrans patch. Did you read how Kimberly dropped the gabapentin all the way down & she is doing fine. I am very confused about what to do. Did you ask if your doctor (neurologist?)if he or she ever had any gbs patients before you, mine did not have any & that makes me less confident in her.

larry g said:

You are the first person that described my symptoms to a “t”. I just got to this dosage of gabapentin & I am a little tired. I am going to stay at this dose for a few days & if I have no relief, then I will drop the dosage. Currently it is not helping much. I am on a mild pain patch, which the neurologist doubled the dose of today. Does the fentenal make you drowsy? Do you feel it is helping with the burning sensation? I take Vicodin when it is bad & it helps a little some of the time.

Gayleen said:

I forgot about the fentenal patches that I also use for pain along with the rest of the meds

Gayleen said:
No just two weeks now at home after that hospital stay Larry. Your dose of Gabapenten was too high for me as it made me too drowsy -I take. 2700 plus the 2 Tylenol
It was scary to hear that Lisarocks66 posted above still suffers after 30 years! Yikes definitely not I want, hope there are answers out there

larry g said:

Hi Gayleen: Have you been out of the hospital for 3 months? How much Gabapentin are you taking? How long have you had these symptoms? No one can tell how long these symptoms will last. I have asked doctors for an average length of time & cannot get an answer other than everyone is different.

Larry


#27

I could not agree with you more. I switched neurologists because my 1st one was pathetic & my new one

came highly recommended but when questioned about any previous GBS patients, she has had none. Have you found that the pain increases each time you decrease the gaba?

Gayleen said:

Thanks for your feedback Larry, I am pretty much on my own medication wise as none of the Dr's know anything about GB and have seen no previous GB patients. My goal is to wean myself off all meds on my own starting with the patch - I don't think that is making me tired, I believe it is the GABA

larry g said:

Hi Gayleen: Does the Fentenal patch make you tired? I am just increasing my Butrans patch from 10 to 20 mgs. I asked my doctor about fentenal & she said it is stronger than the Butrans patch. Did you read how Kimberly dropped the gabapentin all the way down & she is doing fine. I am very confused about what to do. Did you ask if your doctor (neurologist?)if he or she ever had any gbs patients before you, mine did not have any & that makes me less confident in her.

larry g said:

You are the first person that described my symptoms to a "t". I just got to this dosage of gabapentin & I am a little tired. I am going to stay at this dose for a few days & if I have no relief, then I will drop the dosage. Currently it is not helping much. I am on a mild pain patch, which the neurologist doubled the dose of today. Does the fentenal make you drowsy? Do you feel it is helping with the burning sensation? I take Vicodin when it is bad & it helps a little some of the time.

Gayleen said:

I forgot about the fentenal patches that I also use for pain along with the rest of the meds

Gayleen said:
No just two weeks now at home after that hospital stay Larry. Your dose of Gabapenten was too high for me as it made me too drowsy -I take. 2700 plus the 2 Tylenol
It was scary to hear that Lisarocks66 posted above still suffers after 30 years! Yikes definitely not I want, hope there are answers out there

larry g said:

Hi Gayleen: Have you been out of the hospital for 3 months? How much Gabapentin are you taking? How long have you had these symptoms? No one can tell how long these symptoms will last. I have asked doctors for an average length of time & cannot get an answer other than everyone is different.

Larry


#28

I will let you know if the decrease causes more pain Larry, along the way, the first decrease didn’t 't




larry g said:

I could not agree with you more. I switched neurologists because my 1st one was pathetic & my new one

came highly recommended but when questioned about any previous GBS patients, she has had none. Have you found that the pain increases each time you decrease the gaba?

Gayleen said:

Thanks for your feedback Larry, I am pretty much on my own medication wise as none of the Dr’s know anything about GB and have seen no previous GB patients. My goal is to wean myself off all meds on my own starting with the patch - I don’t think that is making me tired, I believe it is the GABA

larry g said:

Hi Gayleen: Does the Fentenal patch make you tired? I am just increasing my Butrans patch from 10 to 20 mgs. I asked my doctor about fentenal & she said it is stronger than the Butrans patch. Did you read how Kimberly dropped the gabapentin all the way down & she is doing fine. I am very confused about what to do. Did you ask if your doctor (neurologist?)if he or she ever had any gbs patients before you, mine did not have any & that makes me less confident in her.

larry g said:

You are the first person that described my symptoms to a “t”. I just got to this dosage of gabapentin & I am a little tired. I am going to stay at this dose for a few days & if I have no relief, then I will drop the dosage. Currently it is not helping much. I am on a mild pain patch, which the neurologist doubled the dose of today. Does the fentenal make you drowsy? Do you feel it is helping with the burning sensation? I take Vicodin when it is bad & it helps a little some of the time.

Gayleen said:

I forgot about the fentenal patches that I also use for pain along with the rest of the meds

Gayleen said:
No just two weeks now at home after that hospital stay Larry. Your dose of Gabapenten was too high for me as it made me too drowsy -I take. 2700 plus the 2 Tylenol
It was scary to hear that Lisarocks66 posted above still suffers after 30 years! Yikes definitely not I want, hope there are answers out there

larry g said:

Hi Gayleen: Have you been out of the hospital for 3 months? How much Gabapentin are you taking? How long have you had these symptoms? No one can tell how long these symptoms will last. I have asked doctors for an average length of time & cannot get an answer other than everyone is different.

Larry


#29

YES!!!, Fish Oil, METHYL B-12(special form of B-12), Alpha Lipoc Acid, Ashwaghanda, B vitamins in general Lion's Mane mushrooms, just eating/being healthy. It's a slow process healing from GBS so don't overdo it. Alpha Liponic Acid seems to be the most painful.


#30

Thank you so much, this natural approach just makes more sense great to have suggested products to stock up on I appreciate this information, so helpful




Timity said:

YES!!!, Fish Oil, METHYL B-12(special form of B-12), Alpha Lipoc Acid, Ashwaghanda, B vitamins in general Lion’s Mane mushrooms, just eating/being healthy. It’s a slow process healing from GBS so don’t overdo it. Alpha Liponic Acid seems to be the most painful.


#31

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.


#32

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.


#33

Hello. Iam not on any meds. But taking the vitamans. I found out I have GBS in may 2014. As of today still trying to found a doctor that will help me. No pt. I have learn more on the Internet from wonderful people with GBS.


#34

If you have had GBS for 3 months, and have not been under close medical care, your case is a very mild one. Best wishes to you.


#35

Finding a good Dr is a challenge Tally good for you fo soldiering on alone. Wishing you strength In the days ahead and a good hopefully speedy recovery
You are doing well and sometimes I think prescribed medications are trouble as they cause more problems than they solve.


#36

Hello. I wish I could say mild case. I just can’t find a doctor that will help me. So iam on my own. And friends from the internet. I have horrible pain hands weakness in the legs below the knees. Thank you lanceb.


#37

Hi Tally,

I didn't mean to minimize your situation, but if you are still alive after 3 months, and have not had medical intervention, then you are fortunate that your case isn't any worse than it is. I have known people that have had GBS and no medical treatment, and they have recovered well. I hope you also recover completely. I am sorry for your pain, we (those on this forum) can sympathize and empathize, for we have experienced it also.

I'm very sorry you have not been able to find a doctor to assist you. What country/state are you in? Perhaps another forum member in your area can give advice.

Good luck!


#38

I was in the hospital for a week. Spinal tap is how they found out that I had GBS. Was to go into a nursing home. I said no. I had n clue about GBS, while in the hospital they kept wanting to give me a fly shot I said no. Which iam glad I did. I can’t find a doctor that will treat me. The pain in my hands is horrible. Ting
Ing bugs crawling. Iam ok was so active. Iam lucky to walk up the stairs. Not able to take a bath only when somebody here. Going to the store is a work out. At times just getting out of bed is a workout. Ism going to a new doctor tomorrow, iam sorry to say I don’t think I will get any help there either. Last doctor wanted test for everything but this,


#39

Hello. I live Lakewood/calif. I have learn more in one night from the Internet. From people with GBS. The pain is horrible, my hands feet, weak legs. Iam having trouble left eye. Not knowing anything about GBS while in the hoital they wanted to give me a flu shot,I said no. I see new doctor tomorrow, the other one wanted to treat me test me for everything else. Then says see you in three months, I have high blood pressured untreated they say , kidney problems untreated, sweeping of the hands feet untreated. So I on my own research what I could and treating myself. I do t know what else to do.


#40

I'm sorry for your experience. From your description, it almost sounded like you were in a third-world country! I can hardly believe your doctor is completely ignorant of this affliction. I live in the San Fernando Valley, not very far from you. I was in a Kaiser Permanente hospital near me. They see cases like this regularly, and my treatment was good (I think). Also, at the hospital where I had physical therapy/rehab (local, in my neighborhood), the doctor in charge of the PT group was a GBS patient. So it's not that uncommon around here (So Cal).

I suspect there are others near you on this forum that can suggest a good doctor. Anyone?

Good luck!