Hi Chris. Welcome again and let me share a bit of my story with you. I have posted this elsewhere but can’t remember which thread so will just go at it again:D !

I was diagnosed with GBS in 1983. I was totally paralyzed and on life support. I recovered over a 1-2 year period and went on to live a fairly normal life, similar to you. I had residuals, but they weren’t anything I couldn’t live with. I had trouble swallowing and would choke easily, one vocal chord does not work so I have trouble with my voice, can’t sing, etc., had tingling in my fingers and toes with some stabbing pains, some numb areas on my body, fatigue, and deep muscle pain on pressure. All of these things were there, but I was able to ignore them for the most part, and worked full time while raising four children.

About 4 or so years ago, I began to get increased tingling, buzzing, electric shocks, stabbing pains in my feet increased, touching my face felt like razor blades on it, creepy crawling feelings (like bugs on me), areas on my face that would get pins and needles, lips that tingle and go numg, weakness in my right thigh that made it very difficult to climb stairs. Is this sounding familiar? What was/is most disconcerting was that it comes and goes. The sensations now move all over my body, I get severe spasms in my muscles, and no two days are ever the same. I can go great guns one day and then hardly walk the next. It is concerning. I have found that if I over do things, the issues are exacerbated.

I am like you. I went home from hospital “healed” in the words of the medical profession. I have no baseline data and did not see a neuro at any time after late fall of 1983. All my records have been purged and one of the hospitals I was in has closed so I can’t even go back and get my records. I have tried.

Last Nov., I went back to a new neuro and had NCV and EMG testing and was diagnosed with peripheral polyneuropthy. My neuropathy affects all four outer limbs of the body and has been written off as GBS residuals. I was put on Neurontin and it was helpful but I could not deal with the side effects so have gone off it and am managing without it. Some days are worse than others. Today, for instance I am having the “electric shocks” in my upper back. The funny part in that is that they are in the area of my back where I am numb. (an area about the size of a small plate)

I am not saying you are also affected by residuals but there are a number of us here on the forums who years later, are again being affected by GBS. There are some posts about this that may interest you. We are convinced we have what is referred to as Post GBS syndrome which could be likened to Post Polio syndrome. You may want to research PPS. You may find similarities to what you are experiencing.

I am angry that more dr’s are not paying attention to what is happening to us. If I knew 25 years ago what I know now, I would have lived my life very differently. The sense is that for a lot of us that had GBS there was/is axon damage and this has not repaired. By pushing ourselves, perhaps overdoing it when our bodies were screaming at us to stop, we did ourselves more harm than good.

I hope this helps you. If you want more info or I can support you in any way, please do not hesitate to ask or PM me. I am always willing to do what I can to help as are so many of us here.

Take care

Dear Legion,

My story and Jan 83s are almost identical, however I had very few residuals for over 20 years. I had GBS in 1976 when I was 19 and pregnant. I was totally paralyzed, on respirator and even my autonomic nerves were affected; I had wild swings in heart rate and blood pressure.

About 5 years ago I began to have tingling and buzzing in my feet, pain in upper back, and extremities. A neuro ran nerve conduction and EMG and said I had nerve damage in lower legs and feet and carpal tunnel. She thinks my problems are GBS related. These last few years have been worse. The fatigue is horrible and I get wondering pains in muscles and tendons throughout my body. Also, tingling, buzzing in several places. Sometimes I feel like my chest muscles are tight. This is very scary.

A lot of us are like you, trying to figure all this out. By the number of post GBS patients complaining about these things, it must be related.
Take comfort in knowing that you are not alone.

Boomerbabe

I would recommend seeing an Neuro Muscular Specialist. Typically this will require a referral from your Neurologist, but not always. Also, you are only going to find this specialist at a teaching University medical facility OR a big hospital.

The Neuro-muscular specialist is a step above the Neurologist and should be able to clearly diagnose you with CIDP, GBS, Miller’s, etc… If its a Polyneuropathy then I have been told this specialist is a “must see”. Your Neurologist isn’t always going to make this call, mine did, but many won’t throw in the towel and ask for an expert that studies the Nerves and the Muscles.

I recently made this effort and his team changed my diagnosis from GBS to CIDP. They were also able to conclude no Axion damage yet. It is also this specialist that will set my course of treatment which will be administered by my local Neuro.
A side benefit is now I am also a patient with the Specialist, so my Neuro can consult with them or I can even call the specialist.

Hi Chris,

Welcome to the family. don’t give up hope. Eventually, they will find out what is going on and how to treat it but you have to stay on top of things. Keep a journal of what is going on and what the doctor tells you each time you go. Also if possible, start getting a copy of all test results so if you get referred you will have everything you need. Sometimes we are our only advocates.

Take care and good luck

sherry

Zbrd,

Your advice is good, however, there are only a handful of teaching hospitals that truly know anything about GBS or CIDP. You must see a specialist who is at a facility that has studied GBS. Hopkins, some of the Mayo clinics, and others do have GBS specialists. Many people don’t have access though. Too often, most GBS patients are told that “no one really knows what the long term effect are.” GBS and related diseases are rare and few studies have been done.

I hope you are feeling better.

Boomerbabe

Hi Chris! This VA stuff is really a touchy situation with me right now. My father before his passing stayed in the VA in Durham, NC for 4 weeks. One doctor would say one thing and then another doctor would say something else.
One night on the way in to see my father. He had a bleed on his brain when admitted causing strokes. He would get better and then another bleed would come along. It took the doctors there 4 weeks to finally tells us he had a brain tumor that was not operable.
But I caught a nurse in his room dragging my father to the bathroom and was yelling at him. Telling him, that he was walking fine earlier and I don’t know why you are giving me a hard time! She was really getting nasty with my father.
I was standing at the door the entire time and when I yelled to her to get my father back in bed and call the doctor Stat! She almost passed out! Told the nurse my father was having another brain bleed and get him into CT Scan Stat. They listened to me and sure enough he had another stroke and bleed on his brain.
My father was a firm believer in the VA Hospital. 22 1/2 years Army Retired. All full blooded Army! Grew up Army. Heard the Army stories. I saw the care that my father got in the VA. Not once but more than once, I felt like telling them off! The treatment my father got as a US Veteran was poor! And then seeing new injured soldiers being placed in Walter Reed with mold growing everywhere and the problem about the care of the new soldiers there.
At one time the US Government was for it’s Military and they made a promise to take care of the US Veterans. And Disabled Veterans. Right now, I am not seeing that be the case and other’s have exposed them at what kind of treatment some of our soldiers are getting. I too saw it with my own eyes!
Chris! I don’t know if you get disability or not being a veteran. They go by percentage. Which effects your checks. Even retirement checks!
If it were me in your shoes. I think I would see a Top Notch Hospital like John Hopkins, University of PA Hospital. A good hospital. Let the outsider doctor give you a diagnoses and then if you have enough proof that it is military related then go back to the VA with your records. Even a second opinion is always better than the first in your case! The VA may only rate you having 20percent disibility and you really have 40 percent. My father was a POW in the Korean War. He had been stabbed with bamboo shoots in his legs and made to hang on rope. Saw his best buddy in the camp get his brains blown to bits trying to force the others to talk. It was a nasty war back then. He came home from Korea only weighing 90 pounds and developed diabetes along with Post Traumatic Stress Syndrome. My father reinlisted when he got well again and retired. The Army was all he knew! He did recieve 100 percent disability until he reach 65 years old.
I would get second opinion from a top notch Medical Center. Then transfer over to the VA. My father was a retired Master Sergeant. He had alot of knowledge. Very smart man! I am very proud of him and miss him dearly. Before my father died! He said one thing that stuck by me! He said he wished he would have gotten a second opinion from another facility when he first noticed himself getting sick. He was having nose bleeds, coughing up blood and told his VA doctor about it! Nothing ever got checked out. No xray of his lungs where the cancer first started. If he would have had that Xray when he first started getting sick, I think my father would be alive today.
It’s up to you. But if my father were alive today and talking to you personally for he helped many veterans get in the door to the VA. He would tell you to get seen by a top notch hospital. Get a diagnoses and then transfer to the VA! I hope my advice helped you question tonight! Good luck and I wish you well!

Neurological problems are notoriously hard to diagnose. I spent the majority of the past five years trying to pin down exactly what’s wrong with me. It was first suspected I had MS but was eventually decided that I have CIDP. There are so many neurological diseases that have overlapping symptoms, it really is just a game of trying to rule out things until you finally settle on what it is.

That being said, your symptoms sound similar to mine. I had problems in my hands and arms long before I ever had any problems in my legs. My lumbar puncture came back normal. It’s important to know that there are so many different versions of CIDP. In the booklet I received from the GBS/CIDP organization, it stated that up to 50% of CIDP patients will not present with the typical problems in the legs first manner and as many as 20% of CIDP patients will have normal results on their lumbar puncture.

I don’t have any experience with GBS, so I can’t give any opinion on whether or not it could be residuals from that. Whatever the cause, I pray you get a firm diagnosis soon and are able to get the treatment you need!

Chris, I responded to you on the GBS thread.

Chris,

I was diagnosed with peripheral neuropathy about five years ago. I had been having a very hard time walking for a good while and got a foot drop. Well, two years ago I finally decided to change neurologists, because I just didn’t feel that the one I had been seeing was helping me. So I was referred to the one I am seeing now, and he is wonderful! He is the kind of doctor that actually takes time with you, and if he wants to run a test on you that he can do in the office, then he does it right then and there…he doesn’t schedule you for another appointment like most other doctors. He always says that if there is something wrong with you, he’ll find it – and he did.

Well, within the past two years that I had been seeing him, he always had a hunch that there was something else going on with me because I kept getting weaker and weaker. So finally, this past May, he did a muscle and nerve biopsy on my leg. Diagnosis-CIDP. Finally, an answer!! Of course I was very upset about the diagnosis, but I finally knew what was going on with me. I had countless tests run before this, and they could never find out what was wrong. I, like you, also had the lumbar puncture which showed a slight elevation in my protein. I think that was his last resort before doing the biopsy.

So I strongly reccommend getting a muscle and nerve biopsy. I am so glad that I did.
I hope I helped.
-Amy-

I don’t have anything to add as far as advice or answers to your questions, but I can offer empathy as I am very much in the same boat suddenly.

After years of being dxed with a unnamed peripheral neuropathy, I was finally given a cidp dx, and now, 2.5 years and 4 emgs later (the latest of which was 98% clear), some doctors have been speculating whether or not i have cidp…but more importantly whether or not I need my ivig at all. (common sense mandates that the ivig is why i’m in remission, but some doctors don’t listen to common sense. lucky for me – and my nervous system – i don’t listen to those doctors:rolleyes:)

Anyway, I just wanted to let you know I understand the frustrated and anxious place you’re probably in. Good luck to you and let us know how it turns out.

Dana

Have you had MRIs of the spine to make sure that all is okay there? The reasons I ask are several–
First you said that you have upper neuron disease in the arms. GBS is (supposed to be) a lower neuron disease. Second you said there are impingements and entrapments in the arms–I am not sure if this is in the nerves exiting the spinal cord or distally (such as in carpal tunnel disease), but it there are SPINAL issues at one place and new symptoms, they need to look for spinal issues at other places–like the lumbar spine with new neurologic issues predominantly on one side and associated with pain and gait abnormality and (I think?) axonal damage.
WithHope for a cure of these diseases

Hi Chris, In my opinion, it still sounds like a variation of cidp. There is a form of cidp that affects the axons. In my research I have found many articles on axon damage, it does not recover like myelination recovers on nerves. I do believe they stated once its gone its gone. That doesn’t mean you are doomed, it just means your remaining nerves are working harder to make up for the damaged ones. I’m assuming ms has been ruled out, considering you had soo many different tests performed.
I don’t understand why the dr keeps flip flopping on a cidp dx, no one person is going to meet every single symptom criteria on just one variant. There isn’t enough research being done on cidp to write about every single symptom for every single variant, considering there are 100s.
I am one of the many without a true dx, its still a work in progress. I also had one treatment of ivig and had a menigitis reaction to it. Just because your body has a reaction to a foriegn product in your body, it doesn’t mean you don’t have cidp.
Considering you are having new symptoms, it follows other theories that gbs patients often cross the line and come up with cidp. I’m one of those theories myself in 2 drs thoughts.
As far as a biopsy goes, it can help with a dx and it might not. There are pros and cons to the procedure, but as I see it, if you have trust in the dr who is performing the procedure then go for it. I will be getting a skin biopsy, to see just how many nerves I have left, since I have sensory issues. By performing all the tests they can, maybe it will rule out other possible dxs.
The way I see it is, you have a whole list of possible dxs on one hand, that looks like a bundle of nerves to a dr, they crisscross each other here and there and go up and down at other places. The drs have to unwind that mess of dxs like you unknot a kite string that came off the spool.
All that doesn’t change the fact that you are having problems. There is a big chance that you, as well as myself, may never get a true dx. But that doesn’t change what you are living with, it just makes it frustrating.
I hope this makes some sort of sense, I have brainfog and my fingers aren’t exactly typing what is on the tip of my tongue:p
Keep a positive attitude, Chris. Life has a way of working things out:) Take Care.

Chris,

The nerve biopsy will show if there is any demylation goiong on. I had one done and that is what proved my CIDP. In the beginning I didn’t want it done but now I am glad casuse it was one more test to show disability so I could go off work cause of the pain and discomfort.

Good luck,
Rhonda from Canada

Chris, please get your records from the VA and take them to and outsiade Neuro. The VA will take into consideration what the outside Dr says. Im a Veteran too and they give me everything need. The VA did DX mr first but took my records to and outside Dr and he said the VA were on target. I still today see a VA neuro and and outside neuro. If another dr tells you that you have CIDP the VA can’t just say “NO YOU DONT” MAKE SURE YOU TAKE ALL TEST RESULTS WITH YOU. Once the VA see your DX they will help you with IVIG with home care service, wheelchair, AFO’s you name it. It also seem like they dont want to blame themselves with you having GBS while in the Army. I heard that those shot they gave us with those guns can cause all kind of trouble. You need to speak to a service organization about your GBS while in the service and have them resubmit your claim.