On The Foundation of Peripheral Neuropathy is a list of statins that cause neuropathy. Also read the drug insert for your medication it specifically does not say neuropathy but list the symptoms of neuropathy a sneaky catch.
I have 2 Neurologists. Both professors, with completely different ideas on IVIG. I was diagnosed with SFN then LFN was added then It was changed to CIDP …I suspect to get IVIG funded. Who knows .Anyway Prof 1 prescribed Gammunex 300ml every month . I did 7 months then reacted badly to it and had to have 10 days of cortisone to settle things down. Still can’t walk properly and my fingers are still going numb like my feet but it did make me feel just slightly better in myself.
Prof 2 said it wasn’t worth the risk as it changes the viscosity of your blood and too many people were having strokes and don’t do it .. He offered no other treatment so naturally I jumped in for the 7 months IVIG with prof 1 to try and control this insidious disease .
Can’t get to the bottom of who is right here but prof 1 said it could help CIDP but would have no effect on SFN
My GP just rolls his eyes and says bloody neurologists they never agree on things. Guess it depends on their training. My advise is if there is nothing better give it a shot. BUT hydration is the key. Day before start drinking and keep up copious fluids till 2 days after your infusions. Make sure your clinic has a good reputation and your neuro monitors the procedure . Good luck. I hope it helps if you run with it
IVIG therapy, steroids and immunotherapy, stem cell transplant along with plasma exchange is the treatment for CIDP according to the medical journal I have been reading since they (the doctors) want to test me for CIDP. Reading up on this I have tested positive for over four years for the EBV. GBS results from problems with EBV. EBV- Epstein bar virus
GBS- Gullian Barre Syndrome
Once started on iVIG therapy you are supposed to remain on it. IVIG therapy helps your immune system. You quit IVIG therapy it is supposed to progressively get worse fast according to the medical journals I have been reading. I was on IVIG therapy from 10-18. Dr Oaklander a research neurologist in Boston told me I would not be in as bad shape today if I would have remained on IVIG therapy.
Current diagnosis
SFN, CAD (cardiac autonomic neuropathy), severe sensorimotor peripheral polyneuropathy.
I tried 2 Ketamine Infusions and they were expensive and did nothing to help my severe case of PN. I am an 80 year old Vietnam Veteran and tried about everything there is to try! The end result is that I am way past the 70,000 mile warranty and like a really old home, my pipes are all rusted and corroded!! Taking a small aspirin a day with all the meds I take, including statins and using LOTS of various pain lotions (Sombra seems to work well) and trying to exercise. I am extremely allergic to opiates, most meds, and things like Lachesis that my one Homeopathic doctor prescribed - this did not work at all and seemed to make things worse!!
I am lucky to still be alive given my history and I just try to enjoy each and every day as best I can. Sure sad how many "snake oil salesmen" there are out there trying to rip off us seniors and veterans. I will keep trying and searching for sure. Semper Fi.
IVIG therapy, steroids and immunotherapy, stem cell transplant along with plasma exchange is the treatment for CIDP according to the medical journal I have been reading since they (the doctors) want to test me for CIDP. Reading up on this I have tested positive for over four years for the EBV. GBS results from problems with EBV. EBV- Epstein bar virus
GBS- Gullian Barre Syndrome
Once started on iVIG therapy you are supposed to remain on it. IVIG therapy helps your immune system. You quit IVIG therapy it is supposed to progressively get worse fast according to the medical journals I have been reading. I was on IVIG therapy from 10-18. Dr Oaklander a research neurologist in Boston told me I would not be in as bad shape today if I would have remained on IVIG therapy.
Current diagnosis
SFN, CAD (cardiac autonomic neuropathy), severe sensorimotor peripheral polyneuropathy.
Hello @blessed09, Welcome to Connect. You mentioned having the IVIG infusion treatments after being diagnosed with MS and Guillain-Barre Syndrome. There are also other discussions on the conditions that you might find helpful to connect with other members sharing your symptoms.
Hi @johnbishop , thank you for both the welcome and information. The answer to your question is I don't know I would like to explain my answer and in doing so give a little history and maybe look for some insight or advice or just talk so I don't feel alone or stupidity like a couple so called a Top MS doctor . I didn't realize neurologist treat many conditions but specialize in particular one. In 2015 I was experiencing very unusual changes to my thought process to my muscle control to the way I had to think before my words could come out I had to connect the thought to the words. My speech was slurred my balance was off. My primary care physician suggested I call the hospital my doctors were with for appointment with neurologist. October 2015 I met with neurologist who had a great reputation. I had so much other medical problems osteoarthritis throughout my body from feet , knees, spine and neck, thyroid disease fibromyalgia you get it I underwent months of test she diagnosed me with MS. Still continued to run more tests one being a spinal tap. Because of 3 oncological bands found in my serum along with other medical terms it was Ms and Gillian barre syndrome at that point she told me I need it IVIG infusion treatments okay 6 months twice a week for 5 hours a day. In 3 months she never wants talk to me about my multiple sclerosis. A nurse ran the infusion treatment center. After a couple months I finally connected with the doctor her response was continue taking the injections for Ms unless something happens we will meet when infusion treatment is completed in October 2016
Times nurse couldn't find a vein my blood pressure was low the nurse suggested to Dr. To pause IVIG for a few weeks Dr insisted I was fine . One day after treatment I was extremely tired not like the Norm
Almost 7 days I stayed in bed .time for hospital chest is hurting now . 7/2016 in hospital for 6 days pneumonia, internal bleeding, ulcer I became anemic. I'm sorry this became a book . I finished treatments my PCP called her from my bedside letting her know my situation and take a pause. She ordered a MRI of brain and said I must finish
I did she said I needed more however when she was told insurance company only paid 6 mos. She didn't order another test to see if IVIG worked toe to schedule appointment with assistant. The next neurologist did great exam mental and physical sent me for more MRI
And said he doesn't know about Gillian barre but Ms yes but he specialized in strokes so he sent me to The MS doctor the best . More mri's of brain and cervical spine. No exam. No asking symptoms nothing test came back he responded by telling me I need to see neurosurgeon. My neck has changed since last MRI
What the one 4 months prior he brushed me off as yes you have an abnormal brain scan and lesions etc and one at base of skull oh and by the way you have arterial sclerosis and I asked him what's that and what does he do for treatment he said he does nothing my primary doctor should have seen that okay.
I spent 4 years on a treadmill one doctor to another . My back became cripplingly I did have 2 spinal operation. I just stopped unless your brain lighting up like a Christmas tree Ms is still I think not understood. Not one doctor looked or brought up my spinal tap. Report that said Ms etc but other test to make sure it's not lupus or other disease.
This is a whole nother area lol but a was a teen mom and married and beat from 16 to 19
I said it aloud
so where or who do I go to who will treat me and my health with some real involvement, I dont know the words im looking
I'm sure you understand. Thanks for allowing me to the opportunity to put this down
I have 2 Neurologists. Both professors, with completely different ideas on IVIG. I was diagnosed with SFN then LFN was added then It was changed to CIDP …I suspect to get IVIG funded. Who knows .Anyway Prof 1 prescribed Gammunex 300ml every month . I did 7 months then reacted badly to it and had to have 10 days of cortisone to settle things down. Still can’t walk properly and my fingers are still going numb like my feet but it did make me feel just slightly better in myself.
Prof 2 said it wasn’t worth the risk as it changes the viscosity of your blood and too many people were having strokes and don’t do it .. He offered no other treatment so naturally I jumped in for the 7 months IVIG with prof 1 to try and control this insidious disease .
Can’t get to the bottom of who is right here but prof 1 said it could help CIDP but would have no effect on SFN
My GP just rolls his eyes and says bloody neurologists they never agree on things. Guess it depends on their training. My advise is if there is nothing better give it a shot. BUT hydration is the key. Day before start drinking and keep up copious fluids till 2 days after your infusions. Make sure your clinic has a good reputation and your neuro monitors the procedure . Good luck. I hope it helps if you run with it
I drink 150 ounces of water the day before, the day of, and the day after. I also do cranial sacral therapy within 3 days.
My treatment last weak went awry as my port did work properly. I truly think operator error. I had to have a port study, not as bad as I thought, and I foundout on my 3 hour drive home, that my Ivig was rescheduled for today. Arghhh, not enough time to drink all the water!
I am grateful for my Ivig, I need it for more than neuropathy. It has kept my neuropathy in check for the most part, eating wrong, stress, allergies and my just plain idiocy on my part contribute to be acknowledged by the way my neuropathy feels on any given day.
I tried 2 Ketamine Infusions and they were expensive and did nothing to help my severe case of PN. I am an 80 year old Vietnam Veteran and tried about everything there is to try! The end result is that I am way past the 70,000 mile warranty and like a really old home, my pipes are all rusted and corroded!! Taking a small aspirin a day with all the meds I take, including statins and using LOTS of various pain lotions (Sombra seems to work well) and trying to exercise. I am extremely allergic to opiates, most meds, and things like Lachesis that my one Homeopathic doctor prescribed - this did not work at all and seemed to make things worse!!
I am lucky to still be alive given my history and I just try to enjoy each and every day as best I can. Sure sad how many "snake oil salesmen" there are out there trying to rip off us seniors and veterans. I will keep trying and searching for sure. Semper Fi.
You are lucky. They overdosed me on ketamine when I had a hip injection. They scared the liven dickens out of me when I came out of anesthesia. I could not move my body. I was crying and the nurses were laughing calling it the ketamine high. I normally come out of anesthesia in 30 minutes. It took four hours and 30 minutes my son was scared something had gone wrong. I asked the doctors nurse to never schedule me there again. They gave me 10 mgs versed, 25 mgs ketamine and propranolol. I could not quit crying for three days. I called my normal anesthesiologist gave him the information not knowing he is now part of The Medical Board of Anesthesia. He asked me if I wanted to file a complaint because bottom line I had been overdosed on ketamine it causes disassociation. I said yes. He already had my medical records that I had sent him. I had ketamine in the past no problems but never again. Three weeks the doctor injected my other hip. I told the anesthesiologist no ketamine in recovery only 30 minutes and everything went fine. I have had several friends have the ketamine infusions. They like the high. I don’t like feeling like I am in no control of my body or mind.
Mine have been hazy since 2002 when I had bacterial spinal meningitis. No on would listen to me about my feet. No one would try IVIG therapy so I have proceeded to get worse. I live in Texas and had to go to Boston to get my diagnosis of my tremors being caused by the neuropathy.
Mine is autoimmune but I test negative for everything. In my chart one doctor says Lupus another one RA. All my inflammatory markers are high. When the doctor brought up CIDP I really struggled getting tested still haven’t been tested. The appointment is in July. My thoughts is since mainly men get this why test me? I guess the other four percent are women very low percentage but the more I read about it the more the possibility arises. I walked out really angry at this neurologist for not reviewing any of my medical records.
I drink 150 ounces of water the day before, the day of, and the day after. I also do cranial sacral therapy within 3 days.
My treatment last weak went awry as my port did work properly. I truly think operator error. I had to have a port study, not as bad as I thought, and I foundout on my 3 hour drive home, that my Ivig was rescheduled for today. Arghhh, not enough time to drink all the water!
I am grateful for my Ivig, I need it for more than neuropathy. It has kept my neuropathy in check for the most part, eating wrong, stress, allergies and my just plain idiocy on my part contribute to be acknowledged by the way my neuropathy feels on any given day.
When I read some of the comments especially yours and realise I’m not that bad off .
All the best for your your on going journey with trying to maintain some degree of health ..
Hi @johnbishop , thank you for both the welcome and information. The answer to your question is I don't know I would like to explain my answer and in doing so give a little history and maybe look for some insight or advice or just talk so I don't feel alone or stupidity like a couple so called a Top MS doctor . I didn't realize neurologist treat many conditions but specialize in particular one. In 2015 I was experiencing very unusual changes to my thought process to my muscle control to the way I had to think before my words could come out I had to connect the thought to the words. My speech was slurred my balance was off. My primary care physician suggested I call the hospital my doctors were with for appointment with neurologist. October 2015 I met with neurologist who had a great reputation. I had so much other medical problems osteoarthritis throughout my body from feet , knees, spine and neck, thyroid disease fibromyalgia you get it I underwent months of test she diagnosed me with MS. Still continued to run more tests one being a spinal tap. Because of 3 oncological bands found in my serum along with other medical terms it was Ms and Gillian barre syndrome at that point she told me I need it IVIG infusion treatments okay 6 months twice a week for 5 hours a day. In 3 months she never wants talk to me about my multiple sclerosis. A nurse ran the infusion treatment center. After a couple months I finally connected with the doctor her response was continue taking the injections for Ms unless something happens we will meet when infusion treatment is completed in October 2016
Times nurse couldn't find a vein my blood pressure was low the nurse suggested to Dr. To pause IVIG for a few weeks Dr insisted I was fine . One day after treatment I was extremely tired not like the Norm
Almost 7 days I stayed in bed .time for hospital chest is hurting now . 7/2016 in hospital for 6 days pneumonia, internal bleeding, ulcer I became anemic. I'm sorry this became a book . I finished treatments my PCP called her from my bedside letting her know my situation and take a pause. She ordered a MRI of brain and said I must finish
I did she said I needed more however when she was told insurance company only paid 6 mos. She didn't order another test to see if IVIG worked toe to schedule appointment with assistant. The next neurologist did great exam mental and physical sent me for more MRI
And said he doesn't know about Gillian barre but Ms yes but he specialized in strokes so he sent me to The MS doctor the best . More mri's of brain and cervical spine. No exam. No asking symptoms nothing test came back he responded by telling me I need to see neurosurgeon. My neck has changed since last MRI
What the one 4 months prior he brushed me off as yes you have an abnormal brain scan and lesions etc and one at base of skull oh and by the way you have arterial sclerosis and I asked him what's that and what does he do for treatment he said he does nothing my primary doctor should have seen that okay.
I spent 4 years on a treadmill one doctor to another . My back became cripplingly I did have 2 spinal operation. I just stopped unless your brain lighting up like a Christmas tree Ms is still I think not understood. Not one doctor looked or brought up my spinal tap. Report that said Ms etc but other test to make sure it's not lupus or other disease.
This is a whole nother area lol but a was a teen mom and married and beat from 16 to 19
I said it aloud
so where or who do I go to who will treat me and my health with some real involvement, I dont know the words im looking
I'm sure you understand. Thanks for allowing me to the opportunity to put this down
Thank you for sharing your experience @blessed09. I can't begin to imagine what you have been through with your struggle to find some answers and relief for your symptoms. I can tell you that you are not alone and that there are other members who have struggled finding the right doctor or care team to treat complex conditions such as yours. There is another older discussion that has some active members that you might want to scan through to see if anything sounds similar to your experience.
--- MS? Fibro? - Still no diagnosis. Anyone else in similar situation?https://connect.mayoclinic.org/discussion/so-wondering-if-anyone-is-in-a-similar-situation-with-similar-symptoms/
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On The Foundation of Peripheral Neuropathy is a list of statins that cause neuropathy. Also read the drug insert for your medication it specifically does not say neuropathy but list the symptoms of neuropathy a sneaky catch.
IVIG therapy, steroids and immunotherapy, stem cell transplant along with plasma exchange is the treatment for CIDP according to the medical journal I have been reading since they (the doctors) want to test me for CIDP. Reading up on this I have tested positive for over four years for the EBV. GBS results from problems with EBV. EBV- Epstein bar virus
GBS- Gullian Barre Syndrome
Once started on iVIG therapy you are supposed to remain on it. IVIG therapy helps your immune system. You quit IVIG therapy it is supposed to progressively get worse fast according to the medical journals I have been reading. I was on IVIG therapy from 10-18. Dr Oaklander a research neurologist in Boston told me I would not be in as bad shape today if I would have remained on IVIG therapy.
Current diagnosis
SFN, CAD (cardiac autonomic neuropathy), severe sensorimotor peripheral polyneuropathy.
I tried 2 Ketamine Infusions and they were expensive and did nothing to help my severe case of PN. I am an 80 year old Vietnam Veteran and tried about everything there is to try! The end result is that I am way past the 70,000 mile warranty and like a really old home, my pipes are all rusted and corroded!! Taking a small aspirin a day with all the meds I take, including statins and using LOTS of various pain lotions (Sombra seems to work well) and trying to exercise. I am extremely allergic to opiates, most meds, and things like Lachesis that my one Homeopathic doctor prescribed - this did not work at all and seemed to make things worse!!
I am lucky to still be alive given my history and I just try to enjoy each and every day as best I can. Sure sad how many "snake oil salesmen" there are out there trying to rip off us seniors and veterans. I will keep trying and searching for sure. Semper Fi.
Yes I would say your comments are correct for a positive diagnosis of CIDP or EBV …my diagnosis is hazy to say the least .
Hi @johnbishop , thank you for both the welcome and information. The answer to your question is I don't know I would like to explain my answer and in doing so give a little history and maybe look for some insight or advice or just talk so I don't feel alone or stupidity like a couple so called a Top MS doctor . I didn't realize neurologist treat many conditions but specialize in particular one. In 2015 I was experiencing very unusual changes to my thought process to my muscle control to the way I had to think before my words could come out I had to connect the thought to the words. My speech was slurred my balance was off. My primary care physician suggested I call the hospital my doctors were with for appointment with neurologist. October 2015 I met with neurologist who had a great reputation. I had so much other medical problems osteoarthritis throughout my body from feet , knees, spine and neck, thyroid disease fibromyalgia you get it I underwent months of test she diagnosed me with MS. Still continued to run more tests one being a spinal tap. Because of 3 oncological bands found in my serum along with other medical terms it was Ms and Gillian barre syndrome at that point she told me I need it IVIG infusion treatments okay 6 months twice a week for 5 hours a day. In 3 months she never wants talk to me about my multiple sclerosis. A nurse ran the infusion treatment center. After a couple months I finally connected with the doctor her response was continue taking the injections for Ms unless something happens we will meet when infusion treatment is completed in October 2016
Times nurse couldn't find a vein my blood pressure was low the nurse suggested to Dr. To pause IVIG for a few weeks Dr insisted I was fine . One day after treatment I was extremely tired not like the Norm
Almost 7 days I stayed in bed .time for hospital chest is hurting now . 7/2016 in hospital for 6 days pneumonia, internal bleeding, ulcer I became anemic. I'm sorry this became a book . I finished treatments my PCP called her from my bedside letting her know my situation and take a pause. She ordered a MRI of brain and said I must finish
I did she said I needed more however when she was told insurance company only paid 6 mos. She didn't order another test to see if IVIG worked toe to schedule appointment with assistant. The next neurologist did great exam mental and physical sent me for more MRI
And said he doesn't know about Gillian barre but Ms yes but he specialized in strokes so he sent me to The MS doctor the best . More mri's of brain and cervical spine. No exam. No asking symptoms nothing test came back he responded by telling me I need to see neurosurgeon. My neck has changed since last MRI
What the one 4 months prior he brushed me off as yes you have an abnormal brain scan and lesions etc and one at base of skull oh and by the way you have arterial sclerosis and I asked him what's that and what does he do for treatment he said he does nothing my primary doctor should have seen that okay.
I spent 4 years on a treadmill one doctor to another . My back became cripplingly I did have 2 spinal operation. I just stopped unless your brain lighting up like a Christmas tree Ms is still I think not understood. Not one doctor looked or brought up my spinal tap. Report that said Ms etc but other test to make sure it's not lupus or other disease.
This is a whole nother area lol but a was a teen mom and married and beat from 16 to 19
I said it aloud
so where or who do I go to who will treat me and my health with some real involvement, I dont know the words im looking
I'm sure you understand. Thanks for allowing me to the opportunity to put this down
-
Like -
Helpful -
Hug
2 ReactionsHi roslyn2314,
I drink 150 ounces of water the day before, the day of, and the day after. I also do cranial sacral therapy within 3 days.
My treatment last weak went awry as my port did work properly. I truly think operator error. I had to have a port study, not as bad as I thought, and I foundout on my 3 hour drive home, that my Ivig was rescheduled for today. Arghhh, not enough time to drink all the water!
I am grateful for my Ivig, I need it for more than neuropathy. It has kept my neuropathy in check for the most part, eating wrong, stress, allergies and my just plain idiocy on my part contribute to be acknowledged by the way my neuropathy feels on any given day.
You are lucky. They overdosed me on ketamine when I had a hip injection. They scared the liven dickens out of me when I came out of anesthesia. I could not move my body. I was crying and the nurses were laughing calling it the ketamine high. I normally come out of anesthesia in 30 minutes. It took four hours and 30 minutes my son was scared something had gone wrong. I asked the doctors nurse to never schedule me there again. They gave me 10 mgs versed, 25 mgs ketamine and propranolol. I could not quit crying for three days. I called my normal anesthesiologist gave him the information not knowing he is now part of The Medical Board of Anesthesia. He asked me if I wanted to file a complaint because bottom line I had been overdosed on ketamine it causes disassociation. I said yes. He already had my medical records that I had sent him. I had ketamine in the past no problems but never again. Three weeks the doctor injected my other hip. I told the anesthesiologist no ketamine in recovery only 30 minutes and everything went fine. I have had several friends have the ketamine infusions. They like the high. I don’t like feeling like I am in no control of my body or mind.
Mine have been hazy since 2002 when I had bacterial spinal meningitis. No on would listen to me about my feet. No one would try IVIG therapy so I have proceeded to get worse. I live in Texas and had to go to Boston to get my diagnosis of my tremors being caused by the neuropathy.
Mine is autoimmune but I test negative for everything. In my chart one doctor says Lupus another one RA. All my inflammatory markers are high. When the doctor brought up CIDP I really struggled getting tested still haven’t been tested. The appointment is in July. My thoughts is since mainly men get this why test me? I guess the other four percent are women very low percentage but the more I read about it the more the possibility arises. I walked out really angry at this neurologist for not reviewing any of my medical records.
When I read some of the comments especially yours and realise I’m not that bad off .
All the best for your your on going journey with trying to maintain some degree of health ..
Thank you for sharing your experience @blessed09. I can't begin to imagine what you have been through with your struggle to find some answers and relief for your symptoms. I can tell you that you are not alone and that there are other members who have struggled finding the right doctor or care team to treat complex conditions such as yours. There is another older discussion that has some active members that you might want to scan through to see if anything sounds similar to your experience.
--- MS? Fibro? - Still no diagnosis. Anyone else in similar situation?https://connect.mayoclinic.org/discussion/so-wondering-if-anyone-is-in-a-similar-situation-with-similar-symptoms/