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Living with Polyneuropathy CIDP, GBS, & CMT

Pins and needles elsewhere


#21

Hola, si yo tambien tengo esos sintomas asi, parace que es parte de la enfermedad, no se si ya ha tenido el tratamiento de ivig, con eso le desaparece esos incones,... bueno espero que se sienta mejor dentro de lo que se pueda. Gladys


#22

My burning is over 60% of my body and it's 24/7/365. I feel like someone doused me in gasoline and set me on fire. I wouldn't say pins and needles but more like a buzzing electrical sensation. IVIG and the mixture of lyrica with Vicodin are the only things that lessen the burning sensation. I was just told by a specialist in St Louis that I don't have CIDP, but he also has NO clue to what I do have. Doctors like to put patients in nice neat little boxes, but I never seem to fit into just one. My labs and test results are all over the place. If a normal test range is 0-120, I'll either be at 119 or 121...on the edge of abnormal for everything or am a little bit abnormal. All I really know is that I am miserable and am physically, emotionally, and mentally EXHAUSTED. I cannot and will not do another year like I did last year. I refuse!


#23

I deal with similar issues. I have a burning sensation, it's very intense but feels more like frostbite than on fire. It covers from my feet up to just below my knees and from my hands to about halfway up my forearm. It's there 24/7 and Lyrica has helped with the burning, but not the tingling feeling and numbness which extends farther up and also affects the sides of my face.

I face the same exact problem with test results. I'm always just slightly abnormal or at the edge of normal and my results do change with flares, but not enough for there to be any weight on them.

I was nearly diagnosed with Subacute IDP, but my insurance didn't want to keep paying for me to stay at a rehab hospital where the Dr I had actually listened to me and pushed for aggressive testing... Had I stayed there I would've gotten a brain MRI, LP, and further antibody testing, etc. that may have provided stronger evidence for Subacute IDP. So for those who are in the middle of diagnosis, it really depends on who you go to and how much experience they have with the disease.

Sunshine said:

My burning is over 60% of my body and it's 24/7/365. I feel like someone doused me in gasoline and set me on fire. I wouldn't say pins and needles but more like a buzzing electrical sensation. IVIG and the mixture of lyrica with Vicodin are the only things that lessen the burning sensation. I was just told by a specialist in St Louis that I don't have CIDP, but he also has NO clue to what I do have. Doctors like to put patients in nice neat little boxes, but I never seem to fit into just one. My labs and test results are all over the place. If a normal test range is 0-120, I'll either be at 119 or 121...on the edge of abnormal for everything or am a little bit abnormal. All I really know is that I am miserable and am physically, emotionally, and mentally EXHAUSTED. I cannot and will not do another year like I did last year. I refuse!


#24

I frequently suffer only what I can describe as mini electric shocks throughout my body at frequent times during the day but especially if I am resting-which is quite often! Does anyone else have this?


#25

My back is way worse than my legs. If I lean back when I'm sitting, my back is on fire. It feels like fire ants are crawling up and down my back. I have had nerve damage to my back from multiple bouts of shingles and two rhyzotomies.


#26

My hands and feet were pins and needles, but I also had patches of skin that felt as though they were anesthetized -- just dead. The infusions have helped so much!


#27

My entire back feels like it's on fire. The IVig infusions take the burning away for 24 hours after my infusions. but, that's all.

JanD


#28

Hi, I experience many patches of burning skin--they keep moving around: sometimes it's the lower back, other times legs, other times arms. Plus I have some other weird sensations, as if someone was hitting me with a cold/wet tip in many places. Does anyone experience anything like that?

Also, i wonder if any of you has pain all over after walking or doing physical therapy.


#29

Dana, did you go through the CIDP testing, the EMG, the lumbar puncture and/or the scans? IVIg is not doing anything for my burning back. So, I'm going to start the testing now. The neurologist tried to save me pain by jumping to the IVig. But, it didn't work. I am going to Mayo Clinc in a few months to see Dr. Dyke. In the meantime, my metabolic specialist is working on my Lyme disease. It really helps with my wiggly legs. What does your doctor say causes your burning back. That is the worst pain ever!

Hang in there!

JanD

Dana said:

Hi, I experience many patches of burning skin--they keep moving around: sometimes it's the lower back, other times legs, other times arms. Plus I have some other weird sensations, as if someone was hitting me with a cold/wet tip in many places. Does anyone experience anything like that?

Also, i wonder if any of you has pain all over after walking or doing physical therapy.


#30

Thank you so much for answering. I only did the EMG (normal,but she only did the arms, and I am weak in the legs), no lumbar puncture, as my GP doesn't recommend it and I need a referral for it. I had brain MRI six months ago--didn't find anything. You say "I am going to start the testing now." what testing? Forgive me, but I am on so many discussion boards, I can't remember whether you already have a CIDP diagnosis or are trying to get one, and this is the testing you are talking about.

Yes, burning pain is horrible and nothing helps with it. You just have to suffer through it. Terrible. My dr, says nothing, is no help at all.

Several questions: are you officially diagnosed with Lyme? I am not, but there are people who keep telling me I must have Lyme, based on my symptoms. What is a "metabolic specialist"? Is he a so called "Lyme literate" (I really don't know what to think about these drs, as I have heard so many contradictory opinions about them).

Who is dr. Dyke at Mayo? What is his specialty?

Which Mayo clinic are you going to and where do you live? And what do you mean by wiggly legs? My legs aren't wiggly, but they feel as if they weight tons, and I can walk very little otherwise my entire body hurts.


#31

Dana, I have no diagnosis. The neurologist used CIDP for the insurance company because he really thought IVIg would work. It took the burning pain away for 24 hours only after each booster. I also have dystonia, a neuro-muscular disorder that puts my back into spasms (had it for years). Even my dystonia is abnormal:) I am given Botox injections on my back and and hydrocodone for pain. The hydrocodone does nothing for the burning pain that is only two years old.

I think I listed the basic tests for CIDP. There may be more at Mayo Clinic. I am choosing to go to Rochester MN because I want to see Dr. Peter James B. Dyke, the top neurologist there. My brother-in-law went there when he had POEMS, not CIDP. Unfortunately, it was too late for him, and he passed away. He had been on plasmapheresis, instead of IVig. plasmapheresis erases the markers for POEMS.

Yes, I am officially diagnosed with Lyme. Not only do the blood tests back it up. but Dr. Jeremy E. Kaslow, my metabolic expert internist in CA knew that I had been exposed to mold (not ticks) which gave me the microbes in my blood. The wiggly legs are hard to describe. It's like an army of ants are marching, side by side throughout my legs. It goes away with my Lyme medicine (homeopathic). My legs feel very heavy when I get up in the middle of the night, like wooden legs. I can walk in the daytime, like getting my leg muscles primed first. I do fall and trip if I' not careful.

I hope some other the others on this site can answer your questions better than I can:) Good Luck!

JanD

Dana said:

Thank you so much for answering. I only did the EMG (normal,but she only did the arms, and I am weak in the legs), no lumbar puncture, as my GP doesn't recommend it and I need a referral for it. I had brain MRI six months ago--didn't find anything. You say "I am going to start the testing now." what testing? Forgive me, but I am on so many discussion boards, I can't remember whether you already have a CIDP diagnosis or are trying to get one, and this is the testing you are talking about.

Yes, burning pain is horrible and nothing helps with it. You just have to suffer through it. Terrible. My dr, says nothing, is no help at all.

Several questions: are you officially diagnosed with Lyme? I am not, but there are people who keep telling me I must have Lyme, based on my symptoms. What is a "metabolic specialist"? Is he a so called "Lyme literate" (I really don't know what to think about these drs, as I have heard so many contradictory opinions about them).

Who is dr. Dyke at Mayo? What is his specialty?

Which Mayo clinic are you going to and where do you live? And what do you mean by wiggly legs? My legs aren't wiggly, but they feel as if they weight tons, and I can walk very little otherwise my entire body hurts.


#32

Jan D, I too have the ant-like feeling in my legs and the wooden legs first thing in the morning. God, maybe I have Lyme--though the 3 tests I took for it were all neg. What did you do for Lyme? Treatment, etc.? And where were you tested? I am asking bcz many people say that only Igenex lab in Palo Alto is reliable, but my dr doesns't want to send my work there. I would like to see a top neurologist too but don't know how to get to one. How were you able to get an appt with the neurologist you mention? Did you see other neurologists and what did they say?


#33

Dana, my local neologists in Colorado (I have two of them who do not work together) are referring me to Mayo Clinic. One of them dd his fellowship under Dr. Dyke. The other neurologist has a partner who did his fellowship under Dr. Dyke. I mentioned to you about my brother-in-law who went to Dr. Dyke, just too late.

I've known Dr. Jeremy Kaslow, the metabolic specialist since the late1980s when he was in charge of the UC Irvine Medical Center Immunology department. So, he knows what I can tolerate and what I can't. That's why he uses homeopathic medicine on me. Dr. Kaslow specializes in Lyme. He uses Labcorp to draw the blood, never Quest. He sends it all over the US for different tests. I can't remember where he sent the Lyme blood. He's very picky about tests and usually checks out each one of the specialty places.

Since I've had six IVig boosters with no help for my burning back, I had no problems having my local neurologist referring me to Mayo Clinic to the best neurologist in Rochester. I've found that they are very happy to pass us off if they don't know what to do with us.

I hope that helps.

JanD

Dana said:

Jan D, I too have the ant-like feeling in my legs and the wooden legs first thing in the morning. God, maybe I have Lyme--though the 3 tests I took for it were all neg. What did you do for Lyme? Treatment, etc.? And where were you tested? I am asking bcz many people say that only Igenex lab in Palo Alto is reliable, but my dr doesns't want to send my work there. I would like to see a top neurologist too but don't know how to get to one. How were you able to get an appt with the neurologist you mention? Did you see other neurologists and what did they say?


#34

Jan D. I looked up Dr.J Kaslow and saw that he is in Santa Ana.I am in Northern California and am too sick to travel. I wonder if you could put me in touch with him via email. Also, I wonder where do you live now? I too am very sensitive to meds and would never tolerate antibiotics. Could you tell me what homeopathic med did he prescribe for your Lyme and what are you taking now for Lyme? Thank you.

JanD said:

Dana, my local neologists in Colorado (I have two of them who do not work together) are referring me to Mayo Clinic. One of them dd his fellowship under Dr. Dyke. The other neurologist has a partner who did his fellowship under Dr. Dyke. I mentioned to you about my brother-in-law who went to Dr. Dyke, just too late.

I've known Dr. Jeremy Kaslow, the metabolic specialist since the late1980s when he was in charge of the UC Irvine Medical Center Immunology department. So, he knows what I can tolerate and what I can't. That's why he uses homeopathic medicine on me. Dr. Kaslow specializes in Lyme. He uses Labcorp to draw the blood, never Quest. He sends it all over the US for different tests. I can't remember where he sent the Lyme blood. He's very picky about tests and usually checks out each one of the specialty places.

Since I've had six IVig boosters with no help for my burning back, I had no problems having my local neurologist referring me to Mayo Clinic to the best neurologist in Rochester. I've found that they are very happy to pass us off if they don't know what to do with us.

I hope that helps.

JanD

Dana said:

Jan D, I too have the ant-like feeling in my legs and the wooden legs first thing in the morning. God, maybe I have Lyme--though the 3 tests I took for it were all neg. What did you do for Lyme? Treatment, etc.? And where were you tested? I am asking bcz many people say that only Igenex lab in Palo Alto is reliable, but my dr doesns't want to send my work there. I would like to see a top neurologist too but don't know how to get to one. How were you able to get an appt with the neurologist you mention? Did you see other neurologists and what did they say?


#35

Dana, just use my name, Jan Hunt Dawson when you email him. He "sees" me long distance. He will usually decide which blood tests I need to do before my phone consultation. The phone consultations are used for him to go over the blood tests and then to make a plan which always has supplements, sometimes changes what I'm on. There are different types of alternative therapies that he recommends. The problem I have is that it's hard to find them where I live, like ozone therapy.

My homeopathic medicines are Tonex, Renelix, and apo-Hepat. He has detoxed me for barrellia before too. He uses muscle testing as well as alternative and conventional Western Medicine.

He is brilliant with four board certifications.

JanD


Dana said:

Jan D. I looked up Dr.J Kaslow and saw that he is in Santa Ana.I am in Northern California and am too sick to travel. I wonder if you could put me in touch with him via email. Also, I wonder where do you live now? I too am very sensitive to meds and would never tolerate antibiotics. Could you tell me what homeopathic med did he prescribe for your Lyme and what are you taking now for Lyme? Thank you.

JanD said:

Dana, my local neologists in Colorado (I have two of them who do not work together) are referring me to Mayo Clinic. One of them dd his fellowship under Dr. Dyke. The other neurologist has a partner who did his fellowship under Dr. Dyke. I mentioned to you about my brother-in-law who went to Dr. Dyke, just too late.

I've known Dr. Jeremy Kaslow, the metabolic specialist since the late1980s when he was in charge of the UC Irvine Medical Center Immunology department. So, he knows what I can tolerate and what I can't. That's why he uses homeopathic medicine on me. Dr. Kaslow specializes in Lyme. He uses Labcorp to draw the blood, never Quest. He sends it all over the US for different tests. I can't remember where he sent the Lyme blood. He's very picky about tests and usually checks out each one of the specialty places.

Since I've had six IVig boosters with no help for my burning back, I had no problems having my local neurologist referring me to Mayo Clinic to the best neurologist in Rochester. I've found that they are very happy to pass us off if they don't know what to do with us.

I hope that helps.

JanD

Dana said:

Jan D, I too have the ant-like feeling in my legs and the wooden legs first thing in the morning. God, maybe I have Lyme--though the 3 tests I took for it were all neg. What did you do for Lyme? Treatment, etc.? And where were you tested? I am asking bcz many people say that only Igenex lab in Palo Alto is reliable, but my dr doesns't want to send my work there. I would like to see a top neurologist too but don't know how to get to one. How were you able to get an appt with the neurologist you mention? Did you see other neurologists and what did they say?


#36

Thank you. I googled the supplements you use. Tonex wouldn't work for me because it makes you lose weight and I already lost a lot of weight. I need to put weight on. Renelix is supposed to help with kidney detox, and apo-Hepat with liver detox. The problem is that some of their ingredients would interfere with a med I am on for insomnia and anxiety.

Thank you for agreeing to let me use your name, but I don't have his email address. I thought you might have it, but I guess you use the phone to correspond?

JanD said:

Dana, just use my name, Jan Hunt Dawson when you email him. He "sees" me long distance. He will usually decide which blood tests I need to do before my phone consultation. The phone consultations are used for him to go over the blood tests and then to make a plan which always has supplements, sometimes changes what I'm on. There are different types of alternative therapies that he recommends. The problem I have is that it's hard to find them where I live, like ozone therapy.

My homeopathic medicines are Tonex, Renelix, and apo-Hepat. He has detoxed me for barrellia before too. He uses muscle testing as well as alternative and conventional Western Medicine.

He is brilliant with four board certifications.

JanD


Dana said:

Jan D. I looked up Dr.J Kaslow and saw that he is in Santa Ana.I am in Northern California and am too sick to travel. I wonder if you could put me in touch with him via email. Also, I wonder where do you live now? I too am very sensitive to meds and would never tolerate antibiotics. Could you tell me what homeopathic med did he prescribe for your Lyme and what are you taking now for Lyme? Thank you.

JanD said:

Dana, my local neologists in Colorado (I have two of them who do not work together) are referring me to Mayo Clinic. One of them dd his fellowship under Dr. Dyke. The other neurologist has a partner who did his fellowship under Dr. Dyke. I mentioned to you about my brother-in-law who went to Dr. Dyke, just too late.

I've known Dr. Jeremy Kaslow, the metabolic specialist since the late1980s when he was in charge of the UC Irvine Medical Center Immunology department. So, he knows what I can tolerate and what I can't. That's why he uses homeopathic medicine on me. Dr. Kaslow specializes in Lyme. He uses Labcorp to draw the blood, never Quest. He sends it all over the US for different tests. I can't remember where he sent the Lyme blood. He's very picky about tests and usually checks out each one of the specialty places.

Since I've had six IVig boosters with no help for my burning back, I had no problems having my local neurologist referring me to Mayo Clinic to the best neurologist in Rochester. I've found that they are very happy to pass us off if they don't know what to do with us.

I hope that helps.

JanD

Dana said:

Jan D, I too have the ant-like feeling in my legs and the wooden legs first thing in the morning. God, maybe I have Lyme--though the 3 tests I took for it were all neg. What did you do for Lyme? Treatment, etc.? And where were you tested? I am asking bcz many people say that only Igenex lab in Palo Alto is reliable, but my dr doesns't want to send my work there. I would like to see a top neurologist too but don't know how to get to one. How were you able to get an appt with the neurologist you mention? Did you see other neurologists and what did they say?


#37

Dana, Dr. Kaslow never looks at only what one supplement or medicine does. He looks at everything I'm taking and sees outside the box. Unfortunately, I have not lost a single pound! I gained 20lbs when the neurologist put me on prednisone! What he gives me, would not be what he gives other people. He looks at the whole person before deciding what to use. You'd need to take it up with him. That's why he uses muscle testing.

Check his website for his email. That's what I do when I need to contact him. He charges for the consultations. The insurance girls is very difficult!!!! You just have to work with her. He has no clue just how difficult she is, even though we have all told him. He is so busy that he doesn't need the business.

JanD

Dana said:

Thank you. I googled the supplements you use. Tonex wouldn't work for me because it makes you lose weight and I already lost a lot of weight. I need to put weight on. Renelix is supposed to help with kidney detox, and apo-Hepat with liver detox. The problem is that some of their ingredients would interfere with a med I am on for insomnia and anxiety.

Thank you for agreeing to let me use your name, but I don't have his email address. I thought you might have it, but I guess you use the phone to correspond?

JanD said:

Dana, just use my name, Jan Hunt Dawson when you email him. He "sees" me long distance. He will usually decide which blood tests I need to do before my phone consultation. The phone consultations are used for him to go over the blood tests and then to make a plan which always has supplements, sometimes changes what I'm on. There are different types of alternative therapies that he recommends. The problem I have is that it's hard to find them where I live, like ozone therapy.

My homeopathic medicines are Tonex, Renelix, and apo-Hepat. He has detoxed me for barrellia before too. He uses muscle testing as well as alternative and conventional Western Medicine.

He is brilliant with four board certifications.

JanD


Dana said:

Jan D. I looked up Dr.J Kaslow and saw that he is in Santa Ana.I am in Northern California and am too sick to travel. I wonder if you could put me in touch with him via email. Also, I wonder where do you live now? I too am very sensitive to meds and would never tolerate antibiotics. Could you tell me what homeopathic med did he prescribe for your Lyme and what are you taking now for Lyme? Thank you.

JanD said:

Dana, my local neologists in Colorado (I have two of them who do not work together) are referring me to Mayo Clinic. One of them dd his fellowship under Dr. Dyke. The other neurologist has a partner who did his fellowship under Dr. Dyke. I mentioned to you about my brother-in-law who went to Dr. Dyke, just too late.

I've known Dr. Jeremy Kaslow, the metabolic specialist since the late1980s when he was in charge of the UC Irvine Medical Center Immunology department. So, he knows what I can tolerate and what I can't. That's why he uses homeopathic medicine on me. Dr. Kaslow specializes in Lyme. He uses Labcorp to draw the blood, never Quest. He sends it all over the US for different tests. I can't remember where he sent the Lyme blood. He's very picky about tests and usually checks out each one of the specialty places.

Since I've had six IVig boosters with no help for my burning back, I had no problems having my local neurologist referring me to Mayo Clinic to the best neurologist in Rochester. I've found that they are very happy to pass us off if they don't know what to do with us.

I hope that helps.

JanD

Dana said:

Jan D, I too have the ant-like feeling in my legs and the wooden legs first thing in the morning. God, maybe I have Lyme--though the 3 tests I took for it were all neg. What did you do for Lyme? Treatment, etc.? And where were you tested? I am asking bcz many people say that only Igenex lab in Palo Alto is reliable, but my dr doesns't want to send my work there. I would like to see a top neurologist too but don't know how to get to one. How were you able to get an appt with the neurologist you mention? Did you see other neurologists and what did they say?


#38

Before I started on IVIG, it was like a tribe of pygmies were stabbing me with hypodermic needles on my arms and legs.