Skin Crawling and Itching 20 Years Later
AnonymousMay 21, 2007 at 9:00 am
I am new to the forum and I am posting for my father who is unable to do so himself.
My father was striken with GBS twenty years ago and has made a partial recovery. He has always had some tingling and weakness in his limbs.
However, in the last year or so, and worsening in the past few month, he is experiencing intense itching and a sensation of his skin crawling all over his body.
He has seen neurologists, dermatologists, and alergy specialists, with little or no relief. He has tried antihistamines, steroids, and anti-depressants.
This condition has become pervasive and is seriously affected his quality of life.
Is anyone aware of these symptoms as related to GBS in later years. If so, is there anywhere to turn for treatment?
Thank you in advance for your help.
AnonymousMay 21, 2007 at 9:07 am
hi b & welcome,
for some of us, as we age, our gbs residuals get noticeably worse. since you’ve been to neuros, i assume they have run an ncv & conclude it is not a real gbs attack. have you tried zyrtec for the itching? he should rest much more than he now is to see if it will help. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousMay 21, 2007 at 9:31 am
Thank you for your response.
We have not had the NCV test that you suggest. I would have thought neurology might have done that. (?)
And, I don’t believe we have tried Zyrtec. He has had Hexadrol and it did not help much.
Outside of the itching and skin crawling, at least once a day, he tells me he has an intense prickling wave of sensation that moves from his toes to his head, and back and forth. This can last for hours and drives hime crazy.
He is also treating for prostate cancer. He is taking Casodex, and sometimes I wonder if this might be compounding the problem.
Thanks for your help. We are grasping at anything to help relieve some of his symptoms, and it seems as though there are no answers.
AnonymousMay 21, 2007 at 10:42 pm
I am sorry, but I am new to this forum, and frankly new to forums of this kind at all, and I don’t know exactly what a typical response to a thread would be. Gene was kind enough to offer some thoughtful insight. I see several views of my thread, but no more replies.
Am I overly anxious, as I’m sure everyone is, for ideas and answers? Or, is my topic boring or not applicable, and am I just cluttering up the space.
What is the typical reason for a lack of replies to a thread? I really don’t know.
Thanks, and I apologize for my ignorance.
AnonymousMay 21, 2007 at 11:11 pm
You arent taking up space on the forum, however I think some people may just not know how to respond, possibly because they may not be post GBS for a long time, or they dont recognise the sensations. I [I]think [/I]the more common post GBS symptoms decades later is more pain, fatigue, tingling, numbness, weakness etc …… HOWEVER, every person is different and it [I]could [/I]be the way your dad’s post GBS manifests itself.
Gene’s answer was probably the only correct one to give. I am 21years post and have all the symptoms I mentioned above, which started 18 years post GBS. There isnt much research done on this, however may patients report problems, often decades, post GBS. Many doctors and even neuro’s wont acknowledge that there are these problems, however, some of the leading neuro’s in GBS have realised that many of us have the problems, and have likened it to post polio syndrome.
If you copy and past the following article, you may find some interesting facts.
AnonymousMay 21, 2007 at 11:23 pm
Your Dad is very lucky to have you as an advocate and caregiver. I understand your concern and just want to add depending on the type of treatment he has received for the prostate cancer, that could have stirred up the GBS again. Trauma or stress or injuries can do that. I think the next step would have been for the Neurologist to run an ncv & conclude it is not a real gbs attack. Be patient we are living around the world and due to the different times and difficulties some of us have typing and just living with our own residuals it takes time for some to respond. You are not wasting our time nor yours. GBS means getting better slowly and they just have to get your Dad headed back in the right direction.
AnonymousMay 21, 2007 at 11:55 pm
Thank you for your replies. I know everyone is busy in their own fight.
And, as a father of a child with severe multiple disabilities, I know that easy answers are elusive and often non-existent.
Over the course of the past twenty years, my father has experienced many of the classis post GBS residuals, including pain, fatigue, numbness and tingling. He has learned to cope and has always pressed on.
It is the recent onset of intense itching, skin crawling, and the “wave” of prickling that runs through is body that has us perplexed. This is new to him and it is pervasive.
And, finding a doctor, of any discipline, that will take the time to adopt some sort of strategy in dealing with this is almost impossible, at least in our geographic.
He has a follow-up appointment with an alergist tomorrow. We’ve got our fingers crossed.
Albeit, I am very grateful for your thoughts and ideas.
AnonymousMay 22, 2007 at 7:58 am
This may be completely irrelevant, seeing how I am very early in my recovery from GBS and have no personal knowledge of how GBS may affect a person 20 years later. However, I wanted to share that during the period of my primary symptoms from GBS, I would frequently get what I called “attacks” or “surges” that sound very much like the “waves” you described in your father.
It was like an intense wave of pins and needles that started in my toes, and traveled all the way up my body, all the way to my head, and then it felt like the pins and needles were literally exploding out of my face and lips. When this happened, my heart started racing and it was hard for me to move or talk; then after it was over, my overall condition would be worse than it was before the attack (i.e., paralysis worsened, less coordination, more pain, breathing more labored). Rather than going on a steady downhill climb with the GBS, it felt like I was being knocked down by stair steps with each “surge” or “attack” indicating that I was being knocked down another peg.
My neuro had never heard of this before, but he reasoned that it must have just been my immune system launching noticeable attacks on some part of my brain that triggered these waves. The attacks stopped completely within 24 hours of starting IVIg, and then my condition fully stabilized within 48 hours.
Before I knew it was GBS that was responsible for these surges of pins and needles, I believed maybe I was having seizures or something, especially since I had trouble moving or talking while they were taking place. However, further testing proved that there was no seizure activity in my brain. And since the IVIg stopped it, that’s proof to me that it was just another apect of the GBS.
It’s wild how differently GBS affects different people. I’ve never heard anyone else mention having surges/waves/attacks of this sort, but clearly it’s one possible way that GBS can manifest itself in a person. So it’s possible that this is what’s happening to your father as well. Is it possible to seek approval for a round of IVIg to see if that helps?
Best wishes to you and your father.
AnonymousMay 22, 2007 at 9:02 am
Gene, we live in central Illinois.
Thank you for your input. I don’t believe the “waves” my father is having are quite as intense as yours to be immobilizing, but the duration of 3-4 hours is what is so disturbing. And this is on top of the itching he has most of the remainder of his day.
He spent 4 hours in the emergency room last night again because of the itching and wave sensations. The gave him a shot of Prednisone, as before, and it seems to help somewhat.
Is this IVIG you speak of a questionable treatment? I’m concerned that at age 81, my father might not be able to tollerate it, and/or we won’t be able to find someone to authorize and do it.
We are open to almost any possible solution or relief strategy.
AnonymousMay 22, 2007 at 9:13 am
ivig is usually well tolerated if premeded w 2benedryl & 2 tylenol with a drip not to exceed 150 ml/hr, but it is only 70% successful & only if the gbs antibodies are still in the blood. you’d want to be sure the lp & ncv warrented this.
here are good gbs neuros other gbsers have felt. Barry Arnason, MD Univ of Chicago Chicago, Il 773-702-6386
treated at Alexian Brothers in Elk Grove Village during his recent stay in the CCU with GBS. His neurologist is Dr. Andrew Gordon with Northwest Neurology. They have offices in Hoffman Estates, Barrington and Arlington Heights. The number is 847-882-6604 His other neurologist is Dr. Kuhlman. He and Dr. Gordon are partners, and he’s the most wonderful doctor I’ve ever met. He can be reached at the same number as Dr. Gordon.
take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousMay 22, 2007 at 10:15 am
Hi MrB, has your Dad tried neurontin? it might help with the waves and skin crawling issues. it is used for shingles patients who have the same type of issues, its also used for gbs patients. i know of people who have had the same sensations and the only thing that gave them any type of relief was neurontin. it sounds to me like the nerves are having problems getting their signals through to the muscles correctly, which would cause the wave, crawling sensations. out of curiosity, can your Dad feel sharp things touch his skin? for instance does he feel pin pricks? or hot and cold? I commend you for taking such good care of your Dad while still having your hands full at home. keep up the good work and keep a positive attitude. take care
AnonymousMay 22, 2007 at 11:07 am
Gene, you referred to the lp warranting IVIG. What is the lp? My father is going to see his family practitioner today as a follow-up to his emergency room visit last night. Do you have good luck getting referrals for the kind of tests and treatments we are talking about?
No, we have not tried neurontin. No, he does not have much feeling in his hands or feet, or anywhere for that matter, hasn’t for quite some time. Not a paralysis, just an overall numbness in sensation.
It appears that we need to determine if this is a recurrence of GBS, or a minifestation of post GBS residuals before a viable treatment option can be considered.
Does that sound right?
AnonymousMay 22, 2007 at 12:05 pm
One question that might help determine whether this is a relapse or residuals… Is your father actually getting worse? Is he experiencing any paralysis, or is it strictly numbness/tingling/pain? If it doesn’t seem to be getting worse, then I’d say it’s more likely to be residuals, or “post-GBS syndrome” like post-polio syndrome. From what I understand, as you age, a normal process that occurs is a slow dying-off of nerve cells. This normally wouldn’t be a cause for great concern, but in people who have had nerve-damaging diseases in the past, this can bring about an exacerbation of symptoms that may have long-since disappeared. It’s possible that this might be what’s going on… Just something else to consider.
The “lp” others have referred to is a lumbar puncture, or spinal tap. If your father is actually having a relapse, then it’s likely that he would show abnormally high proteins in his spinal fluid. The other helpful tests might be a NCV test to test how well his nerves are firing, or maybe even an EMG to measure possible nerve damage (though this is often normal for those with GBS).
Good luck with your appointment today.
AnonymousMay 22, 2007 at 12:51 pm
it has been 37+ years for me and i just recently started haveing skin crawling or what feels like bugs crawling under the skin. i talked to my Dr. about this and she had me try Requip (I think spelling is right). This is normally used for recless leg syndrome but we tried it and it has helped that part of my problem.
AnonymousMay 22, 2007 at 1:47 pm
Thank you all so much. I can’t believe the outpouring. I have searched for a similar forum for years to help with my disabled daughter’s myriad of problems and have never found the level of interest and caring I have seen here.
We are off to the doctor with many of your suggestions and ideas.
AnonymousMay 22, 2007 at 6:57 pm
MrB, has your Dad’s dr mentioned cidp? i also don’t have the feeling sensations over most of my body, my dr dx me as having cidp. i have relapsed/remitting type, hospitalized 5 times and some where around 7 stay at home relapses, since aug 05. i use neurontin for the uncomfortable feelings-tingles, sparklers under the skin feelings etc. lately i have been having less nerve pain but a new feeling affecting my lower legs only, starting from the inside going out it feels like i’m being stabbed with a really cold or wet stick-starting in the middle and going to the skin. i’m hoping its the nerves firing again. i have to use 900mg of neurontin at bedtime to be able to get about 4 hours of sleep. the neurontin works in a similar fashion as the Requip. it calms the nerves just enough to get some rest. my husband uses Requip for his restless legs syndrome, he kicks and his legs are constantly moving while he is sleeping if he doesn’t take it. i hope your Dad can find something to help calm his residuals. its a trial and error program to find relief, so don’t get discouraged if the first med doesn’t work. take care.
AnonymousMay 22, 2007 at 8:19 pm
I have heard about the B12 vitamin deficiency. We have never pursued it. Dad has been on a vitamin regimen for years as part of treatment for his lifelong dry skin condition. I guess we always assumed he was getting enough vitamins. Is the B12 therapy an unusally high dose?
No one has mentioned CIDP. I don’t know much about it and there isn’t a lot of exposure to GBS or CIDP in the rural area in which we live. My father doesn’t really have pain with this. It is more of a crawling under the skin sensation starting in his feet and crawling all the way up. And it can last for hours.
His family practitioner prescriped Neurontin today. I haven’t talked with my father since he got home, so I don’t know if has been effective.
AnonymousMay 22, 2007 at 10:48 pm
We are scrambling to find a neurologist with experience in GBS. Our family practitioner is prepared to make a referral tomorrow to whomever we suggest.
You had mentioned doctors in the Chicago area. I am curious if you have some sort of database for GBS specialists, or did you just happen to know of these folks?
Chicago is quite a distance from us, and my father doesn’t travel all that well. We will go wherever we need to, but I am just curious if anyone knows of a neurologist, versed in GBS, in the downstate Illinois area.
As a footnote, we are well into the first dose of Neurontin, and there seems to be some relief at this point.
AnonymousMay 23, 2007 at 11:26 am
I love the knowledge gained on these forums! Sometimes when I am “more tired than usual” I will get the crawly/wavey sensation here or there. I’ve never mentioned it to anyone ’cause it’s so strange! If it weren’t for our sharing how would anyone know what GBS/CIDP is really like?? So, I’m not “to weird”, just belong to a great, strange family 😀 😀
AnonymousMay 23, 2007 at 1:12 pm
I’m a liaison in Chicago, but since my fiance is only two-years post GBS, I can’t answer your questions. Ben is just now starting to experience post-GBS symptoms that have us baffled and confused, and I’m on here trying to find answers too.
Thelma Gifford is a liaison in Southern Illinois that you may want to contact. She’s a nurse and is several years post GBS, so she may have some information to give you. Unfortunately, my liaison brochure is at work, and I’m home with Ben today, so I can’t give you her number. I hope someone else will be on here shortly to look it up for you.
If you have questions about Chicago neuros, feel free to contact me at 630-589-4990.
AnonymousMay 23, 2007 at 1:24 pm
Thank you Shannon. We would prefer a doctor in central or southern Illinois. I have completed the local chapter liason form and am hoping for more information.
In the interim, we are attempting to set something up with one of the doctors Gene had mentioned.
My best to you and Ben.
AnonymousMay 24, 2007 at 9:43 pm
Thank you, Cheryl. I just spoke with my father, and he is in much better spirits.
This week has been a challenge. Thanks to everyone here, Dad has gotten some relief from the pins and needles and itching. We have made contact with an experienced neurologist in our area and hope to get an appointment soon.
I must say I am awed and just plain humbled by the compassion and response on this forum.
Since I joined only several days ago, I have read many posts from others suffering from GBS. Not having GBS myself, I don’t have any suggestions, phone numbers, or comforting words for them, such as I received this week on this forum.
I wish I had something to offer.
AnonymousMay 25, 2007 at 12:04 am
MrB, Don’t sell yourself short there, you are a great caretaker, just look how you helped out your Dad by coming online and asking for help. You getting more educated about GBS/CIDP is a big step in helping those of us who live with these Syndromes. Without educated caretakers, the patient could end up with alot more problems then first experienced. if that makes sense-mind farts again tonight sorry.:o keep up the great support of your Dad and you will have helped the rest of us at the same time. take care.
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