Hi All!
About 8 months ago, I stopped my thalidomide maintenance as instructed by my haemotologist as I had at that time been on in full response for about 6 months. At the next checkup at the end of January, the subject of peripheral neuropathy (PN) came up. I had it quite bad in my feet and hands. Fingers and toes firing of, and often even the soles of my feet and palms of my hands would go mad; only a few seconds or so, but still uncomfortable and irritating. The doctor said that his neurology friends always recommend their patients use over the counter vitamin B complex. He said he also suggested it to all his myeloma patients.
A day or so after this visit we got a box of 50 vitamin B complex capsules, my first of many! Not much difference in the first month, but slowly, slowly I have less and less of the nerves going bananas! Little steps!
I saw the good doc yesterday, and he is very happy with my tests! He has also asked for protein counts to see what my Ig's, and IgG in particular, are up to. He was also happy to hear the results of the B vitamin regimen!
I now very seldom have nerves going bananas, and all I have left is soft tingly feeling in hands and feet and even that is not bad at all! Little fingers and index fingers seem the best. I can even manipulate small objects like little screws without them being dropped or not going into the hole they are supposed to! So maybe the B12 does work for me!
Anybody else with good results? Not so good results?
Rhoslynn
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rhoslynn - Name: Angela Williams
- Who do you know with myeloma?: Marlene with smoldering myeloma or mgus
- When were you/they diagnosed?: June 2012 for me and abt 8 y for Marlene
- Age at diagnosis: 65
Re: Peripheral neuropathy and vitamin B
Hi Rhoslynn,
I had peripheral neuropathy for a while - in my fingers, forearms and lower calves and feet - and, bizarrely, around the tip of my tongue and lips. Luckily I didn't have it too badly. My haematologist prescribed vitamin B and magnesium, but in the end I bought the equivalent in the health food shop as it was cheaper! I do think it helped but it's hard to tell.
I hardly ever get it now - just a faint numbness in my lips and tongue when I'm really tired
Hth,
Miijji
I had peripheral neuropathy for a while - in my fingers, forearms and lower calves and feet - and, bizarrely, around the tip of my tongue and lips. Luckily I didn't have it too badly. My haematologist prescribed vitamin B and magnesium, but in the end I bought the equivalent in the health food shop as it was cheaper! I do think it helped but it's hard to tell.
I hardly ever get it now - just a faint numbness in my lips and tongue when I'm really tired
Hth,
Miijji
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Mijji - When were you/they diagnosed?: 2011
Re: Peripheral neuropathy and vitamin B
My MGUS is the cause of my peripheral neuropathy. Thanks to wonderful researchers, specialists, and the "Beacon," more and more medical professionals are learning about MGUS and the link to neuropathy. Fortunately, it is becoming far less frequent to read that there are no ill effects of MGUS.
While I, like many, am blessed to be an MGUS patient, only in contrast to a myeloma case, never let it be said that neuropathy is a walk in the park. My neurologist prescribed a B-12 injection once each month. It may be helping. I'm not sure, because the pain management physicians have me on other oral 'scripts that are helping alleviate the pain. The oncologist-hematologists have endorsed the use of B-12. It may be a successful combination of prescription meds ... I just do not know. But, while the pain and fatigue are sometimes severe, there is definite relief.
I am simply grateful that I will likely avoid multiple myeloma in my lifetime and want those who are stricken with the disease to know you have our thoughts and prayers. Ben
While I, like many, am blessed to be an MGUS patient, only in contrast to a myeloma case, never let it be said that neuropathy is a walk in the park. My neurologist prescribed a B-12 injection once each month. It may be helping. I'm not sure, because the pain management physicians have me on other oral 'scripts that are helping alleviate the pain. The oncologist-hematologists have endorsed the use of B-12. It may be a successful combination of prescription meds ... I just do not know. But, while the pain and fatigue are sometimes severe, there is definite relief.
I am simply grateful that I will likely avoid multiple myeloma in my lifetime and want those who are stricken with the disease to know you have our thoughts and prayers. Ben
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Ben Dickmann
Re: Peripheral neuropathy and vitamin B
Hi All!
Thank you Ben and Miijji for your thoughts.
I will look at the magnesium aspect. I have not had much in the way of pain. It's really meant more discomfort really. The B complex I take has all the added stuff and was exactly what my haemotologist said his neuro types recommended!
Rhoslynn
Thank you Ben and Miijji for your thoughts.
I will look at the magnesium aspect. I have not had much in the way of pain. It's really meant more discomfort really. The B complex I take has all the added stuff and was exactly what my haemotologist said his neuro types recommended!
Rhoslynn
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rhoslynn - Name: Angela Williams
- Who do you know with myeloma?: Marlene with smoldering myeloma or mgus
- When were you/they diagnosed?: June 2012 for me and abt 8 y for Marlene
- Age at diagnosis: 65
Re: Peripheral neuropathy and vitamin B
I have been taking both a vitamin B complex and l-carnitine (recommended in one of the opinion articles). While the vitamin B was helping, the l-carnitine (also called acetyl-l-carnitine) has almost completely eliminated the "pins and needles" pain. I take 2 every morning plus 1 vitamin B complex.
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Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
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