# Has anyone else been mainly affected by sensory loss? This has even our specialist in Boston questioning treatments **URL:** \ **Category:** General CIDP Discussion\ **Created:** [October 18, 2015, 5:34pm UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018 "2015-10-18T17:34:21Z")\ **Posts on this page:** 20\ **Page:** 1
**Author:** ![My3boys29](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/my3boys29/32/1083_2.png) [@My3boys29](https://forum.livingwithpolyneuropathy.org/u/My3boys29)\ **Post date:** [October 18, 2015, 5:34pm UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/1 "2015-10-18T17:34:21Z")
No Description ---
**Author:** ![JanD](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/jand/32/1060_2.png) [@JanD](https://forum.livingwithpolyneuropathy.org/u/JanD)\ **Post date:** [October 19, 2015, 1:03am UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/2 "2015-10-19T01:03:05Z")
So far, mine is sensory only. That may be how the disease progresses. I really don't know. But, I have started IVIG infusions. After the loading infusion, I had no pain for three days. The booster didn't help. But, I was told to keep getting infusions until about six months to see if it was going to help. Also, I didn't realize that I was really low energy until it was time for my second infusion. The infusions really help with my energy. ---
**Author:** ![Rachelsdaughter](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/rachelsdaughter/32/854_2.png) [@Rachelsdaughter](https://forum.livingwithpolyneuropathy.org/u/Rachelsdaughter)\ **Post date:** [October 19, 2015, 5:09am UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/3 "2015-10-19T05:09:33Z")
Hi, there! :) I was, initially. In the early stages, I was solely experiencing a growing sensory loss (started at the tip of my toes and fingers, and as the time went on the sensory loss grew; moving up my arms and legs) As it all progressed (meaning well after my sensory losses), I started to develop the characteristics; loss of reflexes, strength, endurance, balance etc. In my case, the changes in my sensory status was the most prominent symptoms in both the early stages of decline and the early stages of my recovery. Had I had a "less acute onset", I definitely believe that my only symptom would have been just a growing sensory loss (atleast in the early stages). /Sarah ---
**Author:** ![JanD](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/jand/32/1060_2.png) [@JanD](https://forum.livingwithpolyneuropathy.org/u/JanD)\ **Post date:** [October 19, 2015, 6:27pm UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/4 "2015-10-19T18:27:20Z")
Sarah, Do you think IVIG infusions slow down the progression of CIDP? With all of the pain and burning from the sensory symptoms in my back, I can't imagine what the rest of you go through with the motor involvement! Thank you. Jan Rachelsdaughter said: > Hi, there! :) > > I was, initially. > In the early stages, I was solely experiencing a growing sensory loss (started at the tip of my toes and fingers, and as the time went on the sensory loss grew; moving up my arms and legs) > As it all progressed (meaning well after my sensory losses), I started to develop the characteristics; loss of reflexes, strength, endurance, balance etc. > In my case, the changes in my sensory status was the most prominent symptoms in both the early stages of decline and the early stages of my recovery. > Had I had a "less acute onset", I definitely believe that my only symptom would have been just a growing sensory loss (atleast in the early stages). /Sarah ---
**Author:** ![ModSupport](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/modsupport/32/2610_2.png) [@ModSupport](https://forum.livingwithpolyneuropathy.org/u/ModSupport)\ **Post date:** [October 19, 2015, 9:08pm UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/5 "2015-10-19T21:08:57Z")
My3Boys, When you say "sensory loss", where, specifically is your SO experiencing it? ---
**Author:** ![Rachelsdaughter](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/rachelsdaughter/32/854_2.png) [@Rachelsdaughter](https://forum.livingwithpolyneuropathy.org/u/Rachelsdaughter)\ **Post date:** [October 20, 2015, 11:24am UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/6 "2015-10-20T11:24:18Z")
Hi, Jan! I truly believe that it all depends on your individual way of responding to IVIG treatment. Some patients respond very well (their CIDP may not only slow down, but in some cases you can actually see that IVIG-treatment has kept the CIDP "so controlled" that there has been "remyelination" = these patients previously damaged myelin has, to a certain extant, been repaired) while others may not experience the same effects. And I also do believe that every case of CIDP is not the same; so there really is no telling. Are you receiving IVIG-treatment, Jan? If so, have you, during the time that you've been undergoing treatment, noticed any new symptoms or worsening of the symptoms that you had pre-IVIG-treatment? Those are really observations that are quite telling, as far as whether or not your CIDP is progressing. I really hope that you get some relief from symptoms that your experiencing from your back, Jan! Kind regards/Sarah JanD said: > Sarah, > > Do you think IVIG infusions slow down the progression of CIDP? With all of the pain and burning from the sensory symptoms in my back, I can't imagine what the rest of you go through with the motor involvement! > > Thank you. > > Jan > > Rachelsdaughter said: > > > Hi, there! :) > > > > I was, initially. > > In the early stages, I was solely experiencing a growing sensory loss (started at the tip of my toes and fingers, and as the time went on the sensory loss grew; moving up my arms and legs) > > As it all progressed (meaning well after my sensory losses), I started to develop the characteristics; loss of reflexes, strength, endurance, balance etc. > > In my case, the changes in my sensory status was the most prominent symptoms in both the early stages of decline and the early stages of my recovery. > > Had I had a "less acute onset", I definitely believe that my only symptom would have been just a growing sensory loss (atleast in the early stages). /Sarah ---
**Author:** ![JanD](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/jand/32/1060_2.png) [@JanD](https://forum.livingwithpolyneuropathy.org/u/JanD)\ **Post date:** [October 20, 2015, 6:02pm UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/7 "2015-10-20T18:02:07Z")
Hi Sarah, I'm still pretty new with CIDP. I've had my loading dose of IVIG and my first booster three weeks later. After three days of the loading dose, I was pain free for three days. The booster did nothing for my pain, but helped my energy level. I joined the CIDP Facebook groups and learned how my Lyme disease is probably related to CIDP for me. My internist who is a metabolic specialist has worked on my Lyme disease symptoms in the past. I thought it was gone, even though the blood test show it floating around in me from a horrible mold exposure I had (no tick bites). Dr. Jeremy Kaslow called it Chronic Pervasive Microbe-related Neurotoxic Immunesupression (CPMNI). It's time to go back and attack the Lyme Disease, along with receiving the IVIG infusions. I'm learning so much from this group. Thank you, Sarah. Jan Rachelsdaughter said: > Hi, Jan! > > I truly believe that it all depends on your individual way of responding to IVIG treatment. > > Some patients respond very well (their CIDP may not only slow down, but in some cases you can actually see that IVIG-treatment has kept the CIDP "so controlled" that there has been "remyelination" = these patients previously damaged myelin has, to a certain extant, been repaired) while others may not experience the same effects. > And I also do believe that every case of CIDP is not the same; so there really is no telling. > > Are you receiving IVIG-treatment, Jan? > If so, have you, during the time that you've been undergoing treatment, noticed any new symptoms or worsening of the symptoms that you had pre-IVIG-treatment? Those are really observations that are quite telling, as far as whether or not your CIDP is progressing. > > I really hope that you get some relief from symptoms that your experiencing from your back, Jan! > Kind regards/Sarah > > JanD said: > > > Sarah, > > > > Do you think IVIG infusions slow down the progression of CIDP? With all of the pain and burning from the sensory symptoms in my back, I can't imagine what the rest of you go through with the motor involvement! > > > > Thank you. > > > > Jan > > > > Rachelsdaughter said: > > > > > Hi, there! :) > > > > > > I was, initially. > > > In the early stages, I was solely experiencing a growing sensory loss (started at the tip of my toes and fingers, and as the time went on the sensory loss grew; moving up my arms and legs) > > > As it all progressed (meaning well after my sensory losses), I started to develop the characteristics; loss of reflexes, strength, endurance, balance etc. > > > In my case, the changes in my sensory status was the most prominent symptoms in both the early stages of decline and the early stages of my recovery. > > > Had I had a "less acute onset", I definitely believe that my only symptom would have been just a growing sensory loss (atleast in the early stages). /Sarah ---
**Author:** ![JanD](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/jand/32/1060_2.png) [@JanD](https://forum.livingwithpolyneuropathy.org/u/JanD)\ **Post date:** [October 20, 2015, 6:10pm UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/8 "2015-10-20T18:10:13Z")
Mine is in the weirdest place. My entire back in on fire! I feel like red ants have taken residence in my back. It does make sense in a way because the body attacks the weak spots. I had a rhizotomy at the top of my back (nerves burned) and three bouts of shingles mostly in my lower back, all in one year. When I'm tired, I get the ants crawling up my legs to my waist. I doubt if my case helps. It's not the normal sensory involvement. Jan ModSupport said: > My3Boys, > > When you say "sensory loss", where, specifically is your SO experiencing it? ---
**Author:** ![Robert\_M](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/robert_m/32/775_2.png) [@Robert\_M](https://forum.livingwithpolyneuropathy.org/u/Robert_M)\ **Post date:** [October 20, 2015, 10:33pm UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/9 "2015-10-20T22:33:53Z")
As my sensory loss professed it went from my toes to above my knees. And from my fingers to above the elbows. The loss is gradual and more pronounced at the ends. My motor skills declined as well. My sense of where my hands and feet are became more like stumps with uneven and inconsistent control. With the IVIG the motor improved or I learned to compensate for it. The sensory went through many changes. Skin irritation primarily anything resting on my skin or covering it left me feeling as if it was crawling and I was continually being shocked. With the ivig this has improved. I still experience strong cramps and involuntary muscle jerking but not as often. I backed off of ivig twice and symptoms intensity increased and I became miserable. My feet burn and are in constant pain along with my hands. I continue to experiment with med combinations to find the most helpful non addictive means I can. It is hard to explain to someone feint on fire when in reality your extremities are cold. Or telling someone please don’t touch me it is painfull. Keep up the good fight we are all different and nothing seems to be standard. Two weeks ago the nurse giving my IVIG had placed a microwaved towel wet in a bag wrapped in another towel on my arm to try and locate a vein. In less than five minutes it had burned the arm so bad that after 6 hrs part of the area scanned over. She did not intend it and I could not feel it. Learn to look out for yourself and learn how your body reacts. It will serve you well. ---
**Author:** ![BISHOP22](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/bishop22/32/883_2.png) [@BISHOP22](https://forum.livingwithpolyneuropathy.org/u/BISHOP22)\ **Post date:** [October 21, 2015, 6:33am UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/10 "2015-10-21T06:33:58Z")
JanD: I do have CIDP, since 2000. Regarding each of your infusions, How many days (each session), what was the total amount of Ivig per session? Have you done any Enmg 30 days after first infusion session? If yes, have you any improvement? JanD said: > So far, mine is sensory only. That may be how the disease progresses. I really don't know. But, I have started IVIG infusions. After the loading infusion, I had no pain for three days. The booster didn't help. But, I was told to keep getting infusions until about six months to see if it was going to help. Also, I didn't realize that I was really low energy until it was time for my second infusion. The infusions really help with my energy. ---
**Author:** ![Mel](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/mel/32/382_2.png) [@Mel](https://forum.livingwithpolyneuropathy.org/u/Mel)\ **Post date:** [October 21, 2015, 8:17am UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/11 "2015-10-21T08:17:47Z")
Hello! My name is Melissa and I was diagnosed with CIDP in 2011. Though my symptoms are mostly sensory, I have been treated with small doses of IVIg twice weekly for over two years with great success. My treatment regimen is non-traditional, but Very effective. I see Dr P James B Dyck at the Mayo Clinic in Rochester, MN. I played one of his podcasts over two years ago and it was a Godsend. He specializes in CIDP treatment and has a unique perspective on its treatment. I’ve pasted a link to the podcast. I hope it can help you as much as it helped me! God bless you! I can relate to your sensory numbness and pain - and explaining how you can have both is very difficult. Robert, you did a beautiful job of explaining it! I feel the same things, along with the muscle cramps and spasms. This is an insidious disease, and sticking together is the best thing we can do to fight it! Thank you for your membership and participation. Many people will benefit from it. Here’s the link to the podcast: [https://www.aanem.org/Education/All-Education-Products/Physician-Podcasts?page=2&fileid=2089](https://www.aanem.org/Education/All-Education-Products/Physician-Podcasts?page=2&fileid=2089) All my best and I hope you find a treatment regimen that helps you more! Melissa ---
**Author:** ![JulieAnn](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/julieann/32/198_2.png) [@JulieAnn](https://forum.livingwithpolyneuropathy.org/u/JulieAnn)\ **Post date:** [October 21, 2015, 3:19pm UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/12 "2015-10-21T15:19:06Z")
I also have predominantly sensory symptoms (Dr. Dyck at Mayo diagnosed me in 2003 after a 5-year search to figure out what was going on). At that time, he classified me as a "dirty CISP" (chronic inflammatory sensory polyradiculoneuropathy), because I did have some slight weakness in a few areas. With time, I have developed a little more weakness, but I think it is more because of deconditioning. It is difficult for others to understand how you can say your legs and feet are numb, but they burn, are cold, have shooting pains, pins and needles, crawling, etc. all at the same time! I understand this is because we have both small and large nerve fiber involvement. I use a hand control in my car, because I don't know what my feet are doing without looking at them, wear AFO's because of foot drop and loss of proprioception which causes me to roll my ankles and fall, and use a cane inside and forearm crutches outside. My balance is practically nonexistent, and I can't do anything if it's dark. Because I was diagnosed nearly 6 years after my first symptoms started (numb toes, patch of numbness on my hip, perineal area, side of face and tongue), the treatments that help most did not help me much. High dose IV steroids were tried first and then IVIG which helped a little with energy, but really nothing for the sensory issues. After a serious reaction to Gammagard, my neurologist decided to stop the IVIG since I really wasn't seeing much change. I am now only treating the neuropathy symptoms with high-dose gabapenten (2700 mg/day) and my local doctor just added Cymbalta last week. I occasionally take some tramadol when it's more than I can tolerate. I had spinal nerve biopsies at the time I was being worked up at Mayo and have some sciatica symptoms that can really flare (like the last 2 days), which cause more burning pain into my hip and a shock-like pulsation in my heel. How can I say I feel those sensations when I can't feel you touch me there? I can't explain it--almost like phantom pain. The Cymbalta is making me a little nauseous, dizzy, and sleep is really messed up, but he wants me to try and power through it for a couple of weeks and hopes the side effects will dissipate and I get some more relief from the neuropathy symptoms. I was evaluated and went through the first 2 phases of testing at Northwestern in Chicago for an autologous stem cell transplant, but during the last phase they declined to include me in the trial because my symptoms were predominantly sensory and they really wanted to treat the "typical" CIDP patient first to see what results they could achieve. I have been in touch with many of the transplant patients and they have had HUGE improvements. Hopefully, they will soon consider treating those of use with mostly sensory symptoms. I've been dealing with this a long time. The theme I've found with talking to others is that we are all unique. What works for me may not work for you and vice versa. Do everything you can to find a doctor who will really listen to you, think outside the box, work with you as an individual. Get the things you need to walk and drive safely. Get handrails at your doors, grab bars in your bathroom, whatever it takes to keep going! It's not ideal or glamorous or fashionable, but it keeps us safe and functioning and allow us to live the fullest life we can. ---
**Author:** ![BISHOP22](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/bishop22/32/883_2.png) [@BISHOP22](https://forum.livingwithpolyneuropathy.org/u/BISHOP22)\ **Post date:** [October 21, 2015, 6:22pm UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/13 "2015-10-21T18:22:17Z")
I've also met Dr. Dick, and Dr. Wolfgang Singer at Mayo Clinic. I've been thru same exams you did (very expensive, but...) in 2008. They are really the best. I''ll take a look at Melissa's podcast, but the steam cell transplant notice seems to be very promising. Darkness is a hell for CIDP patients too. I've broken my two tigh-bone due to that. Now I feel like an android. JulieAnn said: > I also have predominantly sensory symptoms (Dr. Dyck at Mayo diagnosed me in 2003 after a 5-year search to figure out what was going on). At that time, he classified me as a "dirty CISP" (chronic inflammatory sensory polyradiculoneuropathy), because I did have some slight weakness in a few areas. With time, I have developed a little more weakness, but I think it is more because of deconditioning. It is difficult for others to understand how you can say your legs and feet are numb, but they burn, are cold, have shooting pains, pins and needles, crawling, etc. all at the same time! I understand this is because we have both small and large nerve fiber involvement. I use a hand control in my car, because I don't know what my feet are doing without looking at them, wear AFO's because of foot drop and loss of proprioception which causes me to roll my ankles and fall, and use a cane inside and forearm crutches outside. My balance is practically nonexistent, and I can't do anything if it's dark. > > Because I was diagnosed nearly 6 years after my first symptoms started (numb toes, patch of numbness on my hip, perineal area, side of face and tongue), the treatments that help most did not help me much. High dose IV steroids were tried first and then IVIG which helped a little with energy, but really nothing for the sensory issues. After a serious reaction to Gammagard, my neurologist decided to stop the IVIG since I really wasn't seeing much change. I am now only treating the neuropathy symptoms with high-dose gabapenten (2700 mg/day) and my local doctor just added Cymbalta last week. I occasionally take some tramadol when it's more than I can tolerate. I had spinal nerve biopsies at the time I was being worked up at Mayo and have some sciatica symptoms that can really flare (like the last 2 days), which cause more burning pain into my hip and a shock-like pulsation in my heel. How can I say I feel those sensations when I can't feel you touch me there? I can't explain it--almost like phantom pain. The Cymbalta is making me a little nauseous, dizzy, and sleep is really messed up, but he wants me to try and power through it for a couple of weeks and hopes the side effects will dissipate and I get some more relief from the neuropathy symptoms. > > I was evaluated and went through the first 2 phases of testing at Northwestern in Chicago for an autologous stem cell transplant, but during the last phase they declined to include me in the trial because my symptoms were predominantly sensory and they really wanted to treat the "typical" CIDP patient first to see what results they could achieve. I have been in touch with many of the transplant patients and they have had HUGE improvements. Hopefully, they will soon consider treating those of use with mostly sensory symptoms. > > I've been dealing with this a long time. The theme I've found with talking to others is that we are all unique. What works for me may not work for you and vice versa. Do everything you can to find a doctor who will really listen to you, think outside the box, work with you as an individual. Get the things you need to walk and drive safely. Get handrails at your doors, grab bars in your bathroom, whatever it takes to keep going! It's not ideal or glamorous or fashionable, but it keeps us safe and functioning and allow us to live the fullest life we can. ---
**Author:** ![BISHOP22](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/bishop22/32/883_2.png) [@BISHOP22](https://forum.livingwithpolyneuropathy.org/u/BISHOP22)\ **Post date:** [October 21, 2015, 6:27pm UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/14 "2015-10-21T18:27:38Z")
Melissa: When trying to download the pódcast, it says can't do download due to a corrupted video. Could you pls check and send it again? Mel said: > Hello! My name is Melissa and I was diagnosed with CIDP in 2011. Though my symptoms are mostly sensory, I have been treated with small doses of IVIg twice weekly for over two years with great success. > > My treatment regimen is non-traditional, but Very effective. I see Dr P James B Dyck at the Mayo Clinic in Rochester, MN. I played one of his podcasts over two years ago and it was a Godsend. He specializes in CIDP treatment and has a unique perspective on its treatment. I've pasted a link to the podcast. I hope it can help you as much as it helped me! > > God bless you! I can relate to your sensory numbness and pain - and explaining how you can have both is very difficult. Robert, you did a beautiful job of explaining it! I feel the same things, along with the muscle cramps and spasms. > > This is an insidious disease, and sticking together is the best thing we can do to fight it! Thank you for your membership and participation. Many people will benefit from it. > > Here's the link to the podcast: > > [https://www.aanem.org/Education/All-Education-Products/Physician-Po...](https://www.aanem.org/Education/All-Education-Products/Physician-Podcasts?page=2&fileid=2089) > > All my best and I hope you find a treatment regimen that helps you more! > > Melissa ---
**Author:** ![JanD](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/jand/32/1060_2.png) [@JanD](https://forum.livingwithpolyneuropathy.org/u/JanD)\ **Post date:** [October 21, 2015, 9:37pm UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/15 "2015-10-21T21:37:22Z")
Hi Melissa, I listened to the podcast. If I really have CIDP, I'm being under dosed with IVIG. My prescription says I had 2g-1kg over 3-5 days (it was three days) for loading dose, followed by 1gm- 1kg each month. I've only had one of the monthly doses and it didn't help like the initial dose. He really does not know if I have CIDP since it would be at the sensory stage. He called it CIDP to get pre-approval from my insurance companies. I do take 1200 mg Horizant (gabapentine time release) and 30 mg, of Cymbalta along with my medications for Dystonia (neuromuscular disorder), which helps. I have prescription compounded topical pain cream that takes the edge of of the pain too. My husband knows Mayo Clinic all too well. His father went there for radiation for colon cancer in the 60's. His brother saw James Dyke, MD for Poems. My husband is the last living member of his family. I've brought up Mayo Clinic anyway. He said to make an appointment. I think I'll give my local neurologist a call about the dosage since I haven't been on the IVIG that long. Thank you all for your information. I greatly appreciate it. We have to be our own advocates. Jan Mel said: > Hello! My name is Melissa and I was diagnosed with CIDP in 2011. Though my symptoms are mostly sensory, I have been treated with small doses of IVIg twice weekly for over two years with great success. > > My treatment regimen is non-traditional, but Very effective. I see Dr P James B Dyck at the Mayo Clinic in Rochester, MN. I played one of his podcasts over two years ago and it was a Godsend. He specializes in CIDP treatment and has a unique perspective on its treatment. I've pasted a link to the podcast. I hope it can help you as much as it helped me! > > God bless you! I can relate to your sensory numbness and pain - and explaining how you can have both is very difficult. Robert, you did a beautiful job of explaining it! I feel the same things, along with the muscle cramps and spasms. > > This is an insidious disease, and sticking together is the best thing we can do to fight it! Thank you for your membership and participation. Many people will benefit from it. > > Here's the link to the podcast: > > [https://www.aanem.org/Education/All-Education-Products/Physician-Po...](https://www.aanem.org/Education/All-Education-Products/Physician-Podcasts?page=2&fileid=2089) > > All my best and I hope you find a treatment regimen that helps you more! > > Melissa ---
**Author:** ![JanD](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/jand/32/1060_2.png) [@JanD](https://forum.livingwithpolyneuropathy.org/u/JanD)\ **Post date:** [October 21, 2015, 9:45pm UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/16 "2015-10-21T21:45:33Z")
Dear BISHOP22, What is Enmg? I had 2mg/kg over 3-5 days (it was three days) for my loading dose. Then 1gm/kg each month. I've only had one of the monthly infusions, which did not help like the loading dose. I had three pain free days after my loading dose. Jan BISHOP22 said: > JanD: I do have CIDP, since 2000. Regarding each of your infusions, How many days (each session), what was the total amount of Ivig per session? Have you done any Enmg 30 days after first infusion session? If yes, have you any improvement? > > JanD said: > > > So far, mine is sensory only. That may be how the disease progresses. I really don't know. But, I have started IVIG infusions. After the loading infusion, I had no pain for three days. The booster didn't help. But, I was told to keep getting infusions until about six months to see if it was going to help. Also, I didn't realize that I was really low energy until it was time for my second infusion. The infusions really help with my energy. ---
**Author:** ![BISHOP22](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/bishop22/32/883_2.png) [@BISHOP22](https://forum.livingwithpolyneuropathy.org/u/BISHOP22)\ **Post date:** [October 21, 2015, 10:33pm UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/17 "2015-10-21T22:33:25Z")
Enmg is almot the same as **electromyography (EMG).** I've been thru Ivig infusion for several years, but always 2mg/Kg over 5 days, never 3! JanD said: > Dear BISHOP22, > > What is Enmg? I had 2mg/kg over 3-5 days (it was three days) for my loading dose. Then 1gm/kg each month. I've only had one of the monthly infusions, which did not help like the loading dose. I had three pain free days after my loading dose. > > Jan > > BISHOP22 said: > > > JanD: I do have CIDP, since 2000. Regarding each of your infusions, How many days (each session), what was the total amount of Ivig per session? Have you done any Enmg 30 days after first infusion session? If yes, have you any improvement? > > > > JanD said: > > > > > So far, mine is sensory only. That may be how the disease progresses. I really don't know. But, I have started IVIG infusions. After the loading infusion, I had no pain for three days. The booster didn't help. But, I was told to keep getting infusions until about six months to see if it was going to help. Also, I didn't realize that I was really low energy until it was time for my second infusion. The infusions really help with my energy. ---
**Author:** ![Paco](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/paco/32/1065_2.png) [@Paco](https://forum.livingwithpolyneuropathy.org/u/Paco)\ **Post date:** [October 22, 2015, 7:47pm UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/18 "2015-10-22T19:47:31Z")
BISHOP22 said: > Enmg is almot the same as **electromyography (EMG).** I've been thru Ivig infusion for several years, but always 2mg/Kg over 5 days, never 3! > > JanD said: > > > Dear BISHOP22, > > > > What is Enmg? I had 2mg/kg over 3-5 days (it was three days) for my loading dose. Then 1gm/kg each month. I've only had one of the monthly infusions, which did not help like the loading dose. I had three pain free days after my loading dose. > > > > Jan > > > > BISHOP22 said: > > > > > JanD: I do have CIDP, since 2000. Regarding each of your infusions, How many days (each session), what was the total amount of Ivig per session? Have you done any Enmg 30 days after first infusion session? If yes, have you any improvement? > > > > > > JanD said: > > > > > > > So far, mine is sensory only. That may be how the disease progresses. I really don't know. But, I have started IVIG infusions. After the loading infusion, I had no pain for three days. The booster didn't help. But, I was told to keep getting infusions until about six months to see if it was going to help. Also, I didn't realize that I was really low energy until it was time for my second infusion. The infusions really help with my energy. > > > > > > > > Hello! Paco here.......I was diagnosed with CIDP, after my feet started to get worse just about a year ago now, and months of Dr. appts. and testing. I have had some type of neuropathy since I was a teen and am now almost 62. I suffer only from sensory loss myself. Before October 2014 my feet sometimes felt like they were burning, and often like my socks were balled up underneath, nothing serious. In fact, I thought at the time that everyone's feet felt like that, but then it became that they always felt hot, uncomfortable, burning, tingling, pins and needles, numb, and anything touching them, like a bed sheet, made them send crazy messages like shooting pain, startling shocks, and other craziness....The NCV test showed that I had significant nerve damage in my legs. All the blood tests came back looking great, except they found the ganglioside antibody GD1a in my blood, which is associated with motor nerve neuropathy, yet I still retain all of my muscle strength, balance, and coordination..... my neurologist is/was puzzled.... Living in Wa. State and being a medical marijuana patient, I had done some research and decided to start taking Full Extract Cannabis Oil around mid January. (There is a facebook page called cannabis oil success stories-if you do facebook, check it out. Lots of info.....) I told my neurologist what I was treating the CIDP with, and that my feet were pretty much back to where they were pre diagnosis, and he was very interested, as he had read some info about cannabis oil, and after talking a while, we decided to not do any mainstream treatments, skip the prescription drugs, and continue with the cannabis oil, which we think may be healing my body, or keeping the CIDP to only sensory loss. Either that, or I am misdiagnosed. We are doing a "wait and see" for the next 9 months. I have an appt. with my neurologist in April 2016. If my symptoms worsen, we will try starting mainstream therapy, including IVIG, immediately, but for now, the oil SEEMS to be doing a fabulous job. ---
**Author:** ![JanD](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/jand/32/1060_2.png) [@JanD](https://forum.livingwithpolyneuropathy.org/u/JanD)\ **Post date:** [October 22, 2015, 8:03pm UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/19 "2015-10-22T20:03:54Z")
Melissa, After listening to Dr. Dyke's podcast, I called my neurologist's nurse who does the IVig infusions to ask why my dose was so low. She claimed it wasn't according to the standard protocol. She said most people don't feel anything for quite a few infusions. She did put me on an every three week schedule, instead of four weeks. My concern is that if it's not strong enough, I'll never know if it would have worked. Since I've only had two infusions, I know I'm not being patient. Being patient is always hard for me:) My plan is to try the every three week plan. If it doesn't change by the first of the year, I'll get myself to Mayo Clinic. Thank you for your help. I'm going to put that recording on a flash drive and give it to the neurologist next week when I go in for my third infusion. Jan JanD said: > Hi Melissa, > > I listened to the podcast. If I really have CIDP, I'm being under dosed with IVIG. My prescription says I had 2g-1kg over 3-5 days (it was three days) for loading dose, followed by 1gm- 1kg each month. I've only had one of the monthly doses and it didn't help like the initial dose. He really does not know if I have CIDP since it would be at the sensory stage. He called it CIDP to get pre-approval from my insurance companies. > > I do take 1200 mg Horizant (gabapentine time release) and 30 mg, of Cymbalta along with my medications for Dystonia (neuromuscular disorder), which helps. I have prescription compounded topical pain cream that takes the edge of of the pain too. > > My husband knows Mayo Clinic all too well. His father went there for radiation for colon cancer in the 60's. His brother saw James Dyke, MD for Poems. My husband is the last living member of his family. I've brought up Mayo Clinic anyway. He said to make an appointment. I think I'll give my local neurologist a call about the dosage since I haven't been on the IVIG that long. > > Thank you all for your information. I greatly appreciate it. We have to be our own advocates. > > Jan > > Mel said: > > > Hello! My name is Melissa and I was diagnosed with CIDP in 2011. Though my symptoms are mostly sensory, I have been treated with small doses of IVIg twice weekly for over two years with great success. > > > > My treatment regimen is non-traditional, but Very effective. I see Dr P James B Dyck at the Mayo Clinic in Rochester, MN. I played one of his podcasts over two years ago and it was a Godsend. He specializes in CIDP treatment and has a unique perspective on its treatment. I've pasted a link to the podcast. I hope it can help you as much as it helped me! > > > > God bless you! I can relate to your sensory numbness and pain - and explaining how you can have both is very difficult. Robert, you did a beautiful job of explaining it! I feel the same things, along with the muscle cramps and spasms. > > > > This is an insidious disease, and sticking together is the best thing we can do to fight it! Thank you for your membership and participation. Many people will benefit from it. > > > > Here's the link to the podcast: > > > > [https://www.aanem.org/Education/All-Education-Products/Physician-Po...](https://www.aanem.org/Education/All-Education-Products/Physician-Podcasts?page=2&fileid=2089) > > > > All my best and I hope you find a treatment regimen that helps you more! > > > > Melissa ---
**Author:** ![JanD](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/jand/32/1060_2.png) [@JanD](https://forum.livingwithpolyneuropathy.org/u/JanD)\ **Post date:** [October 22, 2015, 8:17pm UTC](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018/20 "2015-10-22T20:17:55Z")
Hi Paco, I live in Colorado. So, buying Marijuana is no problem, especially since my husband uses it for a disc in his back. I'm 65 and tried it in college. It's so much stronger now that I don't know how to dose it. My pain management doctor told me to try it. I had a horrible experience on it and thought I was velcrowed to the couch. He said that the part I needed is mixed in with other chemicals at this point. He said it would be like smoking a trash can and hoping to get one ingredient in it. The University of Alabama is working on separating it out of the rest of it. I'm glad you can tolerate it and that it's helping you. Jan Paco said: > BISHOP22 said: > > > Enmg is almot the same as **electromyography (EMG).** I've been thru Ivig infusion for several years, but always 2mg/Kg over 5 days, never 3! > > > > JanD said: > > > > > Dear BISHOP22, > > > > > > What is Enmg? I had 2mg/kg over 3-5 days (it was three days) for my loading dose. Then 1gm/kg each month. I've only had one of the monthly infusions, which did not help like the loading dose. I had three pain free days after my loading dose. > > > > > > Jan > > > > > > BISHOP22 said: > > > > > > > JanD: I do have CIDP, since 2000. Regarding each of your infusions, How many days (each session), what was the total amount of Ivig per session? Have you done any Enmg 30 days after first infusion session? If yes, have you any improvement? > > > > > > > > JanD said: > > > > > > > > > So far, mine is sensory only. That may be how the disease progresses. I really don't know. But, I have started IVIG infusions. After the loading infusion, I had no pain for three days. The booster didn't help. But, I was told to keep getting infusions until about six months to see if it was going to help. Also, I didn't realize that I was really low energy until it was time for my second infusion. The infusions really help with my energy. > > > > > > > > > > Hello! Paco here.......I was diagnosed with CIDP, after my feet started to get worse just about a year ago now, and months of Dr. appts. and testing. I have had some type of neuropathy since I was a teen and am now almost 62. I suffer only from sensory loss myself. Before October 2014 my feet sometimes felt like they were burning, and often like my socks were balled up underneath, nothing serious. In fact, I thought at the time that everyone's feet felt like that, but then it became that they always felt hot, uncomfortable, burning, tingling, pins and needles, numb, and anything touching them, like a bed sheet, made them send crazy messages like shooting pain, startling shocks, and other craziness....The NCV test showed that I had significant nerve damage in my legs. All the blood tests came back looking great, except they found the ganglioside antibody GD1a in my blood, which is associated with motor nerve neuropathy, yet I still retain all of my muscle strength, balance, and coordination..... my neurologist is/was puzzled.... Living in Wa. State and being a medical marijuana patient, I had done some research and decided to start taking Full Extract Cannabis Oil around mid January. (There is a facebook page called cannabis oil success stories-if you do facebook, check it out. Lots of info.....) I told my neurologist what I was treating the CIDP with, and that my feet were pretty much back to where they were pre diagnosis, and he was very interested, as he had read some info about cannabis oil, and after talking a while, we decided to not do any mainstream treatments, skip the prescription drugs, and continue with the cannabis oil, which we think may be healing my body, or keeping the CIDP to only sensory loss. Either that, or I am misdiagnosed. We are doing a "wait and see" for the next 9 months. I have an appt. with my neurologist in April 2016. If my symptoms worsen, we will try starting mainstream therapy, including IVIG, immediately, but for now, the oil SEEMS to be doing a fabulous job. [Next page](https://forum.livingwithpolyneuropathy.org/t/has-anyone-else-been-mainly-affected-by-sensory-loss-this-has-even-our-specialist-in-boston-questioning-treatments/1018.md?page=2)