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CIDP - Autoimmune Disorder
I was diagnosed with CIDP, which an autoimmune-based disease. I've been on prednisone (60mg daily), but achieved no benefit. In fact, the disease seemed to worsen during this period. I
I am looking for some help with my mom. She has CIDP and it has just recently affected her respiratory system. Her doc in Houston (Appel) just told us that there's nothing more he can do. She's been on the intravenous therapy since March 2003, but had a fall and fracture that has seemed to speed her disease up. I can't just let her die without looking for another doctor willing to see her...preferrably one who knows about this disease. Please help. You can e-mail me at ***@****.
Minnie:
I know you sent me an e-mail last week about an antibiotic, but my system went beserk and I lost it!! Hoping you read this and correspond again since I can't rely to you.
***@****
I know you sent me an e-mail last week about an antibiotic, but my system went beserk and I lost it!! Hoping you read this and correspond again since I can't rely to you.
***@****
Hi Folks...
Way back in 1972, when I was just 18 years old, I was the epitome of health. Never got sick, ate the right stuff... and gymnastics reined supreme. I worked for a major insurance company and was digging life in general. On February 4, 1972, the company made it mandatory that ALL employees (over 300 of us) were to report when called (department-by-department) to a station on the 1st floor... and get a flu shot. EVERYONE had to get one.
My symptoms began with having the flu. I dragged my maid-of-honor-self down the aisle the following day in my sister's wedding. By Monday morning, I was fine... but throughout the month of February 1972, that same flu would come and go, come and go. Emergency room visits proved futile. "Oh, you have the viral flu... and you're a little anemic. Take a couple of days off work and rest." The next visit: "You have mononeucliosis." 3rd time: "The X-ray revealed that you have no brain tumor, so it has to be mono." And by the 4th visit in mid-March, my toes were numb... and the left side of my face was partially paralyzed, "If you'd just tell us where you were hit in the fight, we might could be able to help you! If not... here's the name of a neurologist...."
Shortly thereafter, I couldn't handle the flourescent lights in the office and had to wear my sunglasses. My boss called me into his office on a Friday and asked to see my arms. He wanted to know if I was taking drugs! "Christine's gotta be on drugs..." was the office buzz. By Monday, I was couch-ridden and my vision was going double. I called out of work. I did the same thing on Tuesday... and received a Western Union telegram: "Due to excessive absenteeism, your employment with the XXXXX Insurance Companies of America has been terminated." And along with the termination went my group health insurance. I then collapsed over the coffee table and my father had to carry me to the car and into our family doc's office.
"I cannot diagnose this in my office." he told me, and then proceeded to call HIS hospital and I heard him say, "I'm sending a patient via car to Emergency."
Back in 1972, GBS was rare... and there was NO treatments available at all. None of the goodies that alleviate progression of the disease. Zilch. None of the resident doctors could diagnose me... but a neurosurgeon could and did. He did a lumbar to finalize the diagnosis... Guillain Barre Syndrome. Intensive care became the site of my own personal battle ground. Before it was all over in there, I went totally paralyzed, watched a sweet Italian woman die looking directly into my eyes while she passed on... and I swore I wasn't going with her so I missed a trache by the skin of my teeth by sheer willpower that my lungs would be spared. They were, but barely.
I lost count on how many lumbar punctures were performed. I couldn't feel them anyways... and I couldn't feel the EEG's or whatever else they did because all I could do was move my head back-and-forth along with my eyes. I couldn't feed myself. My older sister sat with me all day and spoon-fed me until the paralysis began receding and movement began rising out of the ashes.
March 27, 1972 is when I entered the hospital... May 20,1972 is when I was released, in a wheelchair- still unable to walk. What used to weigh 125 lbs going in... now weighed 96 lbs going out.
The Guillain Barre Syndrome strikes only once. It does not return. It is not "chronic" and never will be. It does, however, leave you with residual problems in some cases, depending on the intensity of each individual case.
Because the first to go, is the last to return.
In my case, 31 years post GBS? My toes cramp and my feet ache... and... I'm 2-faced. One side works, and the other side doesn't.
GBS triggered a genetic autoimmune disorder. Neurofibromatosis. The kind "minus" cafe au'lait spots and skin tumors. They do not exist in my case.
The only nerve in my body that is "read" by my Schwann Cells as being "damaged" is my 7th CN. I've been overrun for 25 years by schwannoma and neurofibroma. In 1999, I had a massive craniotomy. They removed the left side of my forehead and temple and excised tumor after tumor from the floor of my orbit and optic nerve, plus networks of them from my left temporal lobe. 12 hours worth of surgery involving 2 arenas of medicine. Six months after the cranie, I had stereotactic radiosurgery targeting the one growing in my cavernous sinus. Just recently, my oculo-plasty opthalmologist removed two neurofibroma from the same orbit. One from the roof that was pushing my eye down... and one from the floor that was pushing my eye forward. Bulging eyes look horrific, but not anymore.
I have the two best specialists in this part of our country working diligently to keep me alive and well. I have one more surgery to go, and that is to reconstruct my eyelid.
All from a single flu shot... that triggered GBS in a healthy, 18 year old gymnast. I watched Olga Corbett pull off that spectacular back-layout/hand-spring on the uneven bars parked in my wheelchair in front of the television set.
Avoid all flu shots. I mean that with all my heart. You CIDP people! No no no! If you have taken them regularly, please stop. Think back on your episodes and try to remember if you had taken any. I hope not... but if you did, you may have found the trigger.
Take Care,
LJ
Way back in 1972, when I was just 18 years old, I was the epitome of health. Never got sick, ate the right stuff... and gymnastics reined supreme. I worked for a major insurance company and was digging life in general. On February 4, 1972, the company made it mandatory that ALL employees (over 300 of us) were to report when called (department-by-department) to a station on the 1st floor... and get a flu shot. EVERYONE had to get one.
My symptoms began with having the flu. I dragged my maid-of-honor-self down the aisle the following day in my sister's wedding. By Monday morning, I was fine... but throughout the month of February 1972, that same flu would come and go, come and go. Emergency room visits proved futile. "Oh, you have the viral flu... and you're a little anemic. Take a couple of days off work and rest." The next visit: "You have mononeucliosis." 3rd time: "The X-ray revealed that you have no brain tumor, so it has to be mono." And by the 4th visit in mid-March, my toes were numb... and the left side of my face was partially paralyzed, "If you'd just tell us where you were hit in the fight, we might could be able to help you! If not... here's the name of a neurologist...."
Shortly thereafter, I couldn't handle the flourescent lights in the office and had to wear my sunglasses. My boss called me into his office on a Friday and asked to see my arms. He wanted to know if I was taking drugs! "Christine's gotta be on drugs..." was the office buzz. By Monday, I was couch-ridden and my vision was going double. I called out of work. I did the same thing on Tuesday... and received a Western Union telegram: "Due to excessive absenteeism, your employment with the XXXXX Insurance Companies of America has been terminated." And along with the termination went my group health insurance. I then collapsed over the coffee table and my father had to carry me to the car and into our family doc's office.
"I cannot diagnose this in my office." he told me, and then proceeded to call HIS hospital and I heard him say, "I'm sending a patient via car to Emergency."
Back in 1972, GBS was rare... and there was NO treatments available at all. None of the goodies that alleviate progression of the disease. Zilch. None of the resident doctors could diagnose me... but a neurosurgeon could and did. He did a lumbar to finalize the diagnosis... Guillain Barre Syndrome. Intensive care became the site of my own personal battle ground. Before it was all over in there, I went totally paralyzed, watched a sweet Italian woman die looking directly into my eyes while she passed on... and I swore I wasn't going with her so I missed a trache by the skin of my teeth by sheer willpower that my lungs would be spared. They were, but barely.
I lost count on how many lumbar punctures were performed. I couldn't feel them anyways... and I couldn't feel the EEG's or whatever else they did because all I could do was move my head back-and-forth along with my eyes. I couldn't feed myself. My older sister sat with me all day and spoon-fed me until the paralysis began receding and movement began rising out of the ashes.
March 27, 1972 is when I entered the hospital... May 20,1972 is when I was released, in a wheelchair- still unable to walk. What used to weigh 125 lbs going in... now weighed 96 lbs going out.
The Guillain Barre Syndrome strikes only once. It does not return. It is not "chronic" and never will be. It does, however, leave you with residual problems in some cases, depending on the intensity of each individual case.
Because the first to go, is the last to return.
In my case, 31 years post GBS? My toes cramp and my feet ache... and... I'm 2-faced. One side works, and the other side doesn't.
GBS triggered a genetic autoimmune disorder. Neurofibromatosis. The kind "minus" cafe au'lait spots and skin tumors. They do not exist in my case.
The only nerve in my body that is "read" by my Schwann Cells as being "damaged" is my 7th CN. I've been overrun for 25 years by schwannoma and neurofibroma. In 1999, I had a massive craniotomy. They removed the left side of my forehead and temple and excised tumor after tumor from the floor of my orbit and optic nerve, plus networks of them from my left temporal lobe. 12 hours worth of surgery involving 2 arenas of medicine. Six months after the cranie, I had stereotactic radiosurgery targeting the one growing in my cavernous sinus. Just recently, my oculo-plasty opthalmologist removed two neurofibroma from the same orbit. One from the roof that was pushing my eye down... and one from the floor that was pushing my eye forward. Bulging eyes look horrific, but not anymore.
I have the two best specialists in this part of our country working diligently to keep me alive and well. I have one more surgery to go, and that is to reconstruct my eyelid.
All from a single flu shot... that triggered GBS in a healthy, 18 year old gymnast. I watched Olga Corbett pull off that spectacular back-layout/hand-spring on the uneven bars parked in my wheelchair in front of the television set.
Avoid all flu shots. I mean that with all my heart. You CIDP people! No no no! If you have taken them regularly, please stop. Think back on your episodes and try to remember if you had taken any. I hope not... but if you did, you may have found the trigger.
Take Care,
LJ
CIDP is an auto-immune disorder as you know. One theory as to how auto-immune diseases begin is related to a viral infection. It is believed that that the virus cause an immune reaction, and this reaction recognizes a part of our body as being similar to the virus.
Therefore, as you have already stated the typical therapies revolve around altering ot suppressing the immune system with steroids, IVIg, or "cancer drugs". I am not aware of any center which is using anti-biotics to treat this disorder. My advise is for you to see (if you are not already doing so) a neuromuscular specialist, so that you can discuss your case and any new therapeutic options.
Therefore, as you have already stated the typical therapies revolve around altering ot suppressing the immune system with steroids, IVIg, or "cancer drugs". I am not aware of any center which is using anti-biotics to treat this disorder. My advise is for you to see (if you are not already doing so) a neuromuscular specialist, so that you can discuss your case and any new therapeutic options.
Hi VF,
You symtoms all fit into a methylb12 (active coenzyme version of b 12) deficiency. Frequent infections anywhere from sinus to gums to pneumonias are symtomatic of B12 deficiency. Methylb12 deficiency cause neuropathies, digestive problems, pains, depression, psychosis, etc. It may not be a factor or it may be a contributing factor or it may be the whole ball of wax. A $10 jar of pills can tell you more than $10,000 of testing. There is no risk to taking methylB12. It might even benefit. My life changed totally when I did.
You symtoms all fit into a methylb12 (active coenzyme version of b 12) deficiency. Frequent infections anywhere from sinus to gums to pneumonias are symtomatic of B12 deficiency. Methylb12 deficiency cause neuropathies, digestive problems, pains, depression, psychosis, etc. It may not be a factor or it may be a contributing factor or it may be the whole ball of wax. A $10 jar of pills can tell you more than $10,000 of testing. There is no risk to taking methylB12. It might even benefit. My life changed totally when I did.
MinnieM, again....nice to hear from you. I lived in Houston for 20 years and now I live out in the woods 10 miles West of Conroe. I still work in Houston but one day I'll be out of the city for good.lol I actually grew up in the Bellaire area. Do you know that area?
I'm sorry to hear about your bout with GBS. It comes in all shapes and forms. It sounds like you were nearly crippled back in 1995 which I am sorry to hear. You sound exactly how I used to be. Not good. I've done extensive research on GBS and I have come to the conclusion that after you have your first bout, you will not go back to square one. Sure, alot of symptoms will resurface which can be brought on by stress and in your case, a virus. Alot of symptoms rise to the surface and I have been scared beyond belief on a few occasions over the past year or so. When I get mad or irritated my symptoms get worse. When I overdo it **** yardwork it takes me a few days if not longer to get my energy back up. Full blown relapses do happen but are very rare thank god. The unfortunate thing is that anyone who has GBS will never be the same. Sure some people will make a 95% recovery but no, they are not 100% recovered. I hear some people over at a board that I visit say that they are 100% recovered exept for being fatigued easily or of tingling in feet. That is not 100% recovered. Like I said, your body takes a huge blow.
Minnie, you lost your reflexes and the neurologists did not diagnose you with anything? You have got to be kidding! That's just plain crazy.
Like I have mentioned to VF above, I visit a GBS/CIDP message board and I know it will benefit you. Lots of experts in this field over there. I hope I'm not breaking any rules but I'm going to post the link here for you and VF. These people will help you be prepared for the next time you sit in front of a neurologist. Also, ask them any questions you want and they will gladly answer. I'll see you there. Tell them Johnny sent ya. You take care and I hope to here from you soon. God bless.
http://www.guillain-barre.com/
Johnny
I'm sorry to hear about your bout with GBS. It comes in all shapes and forms. It sounds like you were nearly crippled back in 1995 which I am sorry to hear. You sound exactly how I used to be. Not good. I've done extensive research on GBS and I have come to the conclusion that after you have your first bout, you will not go back to square one. Sure, alot of symptoms will resurface which can be brought on by stress and in your case, a virus. Alot of symptoms rise to the surface and I have been scared beyond belief on a few occasions over the past year or so. When I get mad or irritated my symptoms get worse. When I overdo it **** yardwork it takes me a few days if not longer to get my energy back up. Full blown relapses do happen but are very rare thank god. The unfortunate thing is that anyone who has GBS will never be the same. Sure some people will make a 95% recovery but no, they are not 100% recovered. I hear some people over at a board that I visit say that they are 100% recovered exept for being fatigued easily or of tingling in feet. That is not 100% recovered. Like I said, your body takes a huge blow.
Minnie, you lost your reflexes and the neurologists did not diagnose you with anything? You have got to be kidding! That's just plain crazy.
Like I have mentioned to VF above, I visit a GBS/CIDP message board and I know it will benefit you. Lots of experts in this field over there. I hope I'm not breaking any rules but I'm going to post the link here for you and VF. These people will help you be prepared for the next time you sit in front of a neurologist. Also, ask them any questions you want and they will gladly answer. I'll see you there. Tell them Johnny sent ya. You take care and I hope to here from you soon. God bless.
http://www.guillain-barre.com/
Johnny
My bad tooth was in the upper Left Maxillary area. Tooth #15 to be exact.
Johnny, yes I know where the City of Bellaire is. Close to West U. and the Medical Center.
Thanks for the GBS site. Very interesting.
VF, please send your nice doctors to Houston <g>
Kindly,
Mouse
Johnny, yes I know where the City of Bellaire is. Close to West U. and the Medical Center.
Thanks for the GBS site. Very interesting.
VF, please send your nice doctors to Houston <g>
Kindly,
Mouse
Hi Johnny in Texas. I read your post below to me.
YES VF, GBS and or CIDP can result from dental woes. Ironically, just last night after my GP called me late, I got on the net again. Go to GOOGLE Search and type in Guillain2
This brought up a wealth of information. I saw where various surgical procedures can cause this. They stated Oral Surgery. I had a horrid infection for almost a year in a tooth and had repeated oral surgical treatment in 1995. Prior to all this, I was one happy and healthy camper. Seemingly I went to every doctor I could here in Houston and not a one could diagnose me. Like Johnny stated below.....we were depressed and belonged in the Looney Bend (per the doctors) VF you are very lucky to be diagnosed so treatment can be started quickly.
Getting back to the late phone call last night from my GP, he called to tell me that the SED rate had come down to a 2. Two weeks ago it was a 30. He told me that, had he taken it a month earlier, it may of been a 50. He went on to say that he sincerely thinks that the virus I had in Late May and in early June, caused a reaction to the nerves and muscles resulting in the tingling in all limbs and weakness in my body. He assured me that I will get better, in time. When talking to him, I had not seen the Guillain2 site where it indicates Oral Surgery as a precursor to GBS. I knew when reading this that I was relapsing to the GBS that was never diagnosed in 1995.
Johnny and VF, this is how I felt in 1995 with no help or diagnosis here. My hubby had to get me out of bed and dress and bathe me. I could not lift a thing nor could I stand more than one minute. I saw docs after docs till I hated them all. How stupid can some neurolgists be?? I had no reflexes. No testing was ever done on me and I had great insurance. One neurologist even told me to go home and be GOOD to my husband. Another leaned over the desk and screamed at me to get a job.
I was walking with a cane and a walker. I did not have the strenght to even lift my head so I wore a neck brace. I also wore arm splints to help with the weakness.
All this started with the infected tooth and 4-5 oral surgeries on that area. On the Google site, Guillain2, they mention Oral Surgery. The light bulb went on last night when I read this.
I am suffering the same symptoms again from the recent Virus and I am 100% positive that the 1995 Episode was GBS and I am now having a relapse of this.
I am scheduled to have Nerve tests next Monday but not for GBS but to see why I am Tingling. An orthopedic scheduled this. I will present my information to this neurolgist and hopefully, I will not be laughed out of his office. I am a lot tougher now and will not tolerate rudeness.
I will also e-mail a very kind doctor (not here in Houston) <g>
and share my findings as he may shed some more light into this.
GBS/CIDP is no laughing matter. Every Neuolgist should know about this problem...~~~sigh~~~~
I will stay in touch with private e-mails.
My best to both of you. Pls. keep posting.
YES VF, GBS and or CIDP can result from dental woes. Ironically, just last night after my GP called me late, I got on the net again. Go to GOOGLE Search and type in Guillain2
This brought up a wealth of information. I saw where various surgical procedures can cause this. They stated Oral Surgery. I had a horrid infection for almost a year in a tooth and had repeated oral surgical treatment in 1995. Prior to all this, I was one happy and healthy camper. Seemingly I went to every doctor I could here in Houston and not a one could diagnose me. Like Johnny stated below.....we were depressed and belonged in the Looney Bend (per the doctors) VF you are very lucky to be diagnosed so treatment can be started quickly.
Getting back to the late phone call last night from my GP, he called to tell me that the SED rate had come down to a 2. Two weeks ago it was a 30. He told me that, had he taken it a month earlier, it may of been a 50. He went on to say that he sincerely thinks that the virus I had in Late May and in early June, caused a reaction to the nerves and muscles resulting in the tingling in all limbs and weakness in my body. He assured me that I will get better, in time. When talking to him, I had not seen the Guillain2 site where it indicates Oral Surgery as a precursor to GBS. I knew when reading this that I was relapsing to the GBS that was never diagnosed in 1995.
Johnny and VF, this is how I felt in 1995 with no help or diagnosis here. My hubby had to get me out of bed and dress and bathe me. I could not lift a thing nor could I stand more than one minute. I saw docs after docs till I hated them all. How stupid can some neurolgists be?? I had no reflexes. No testing was ever done on me and I had great insurance. One neurologist even told me to go home and be GOOD to my husband. Another leaned over the desk and screamed at me to get a job.
I was walking with a cane and a walker. I did not have the strenght to even lift my head so I wore a neck brace. I also wore arm splints to help with the weakness.
All this started with the infected tooth and 4-5 oral surgeries on that area. On the Google site, Guillain2, they mention Oral Surgery. The light bulb went on last night when I read this.
I am suffering the same symptoms again from the recent Virus and I am 100% positive that the 1995 Episode was GBS and I am now having a relapse of this.
I am scheduled to have Nerve tests next Monday but not for GBS but to see why I am Tingling. An orthopedic scheduled this. I will present my information to this neurolgist and hopefully, I will not be laughed out of his office. I am a lot tougher now and will not tolerate rudeness.
I will also e-mail a very kind doctor (not here in Houston) <g>
and share my findings as he may shed some more light into this.
GBS/CIDP is no laughing matter. Every Neuolgist should know about this problem...~~~sigh~~~~
I will stay in touch with private e-mails.
My best to both of you. Pls. keep posting.
Hey VF, how are ya? So you have CIDP? I know all about it. I was diagnosed with GBS back in December of 2001. I visit a message board that would interest you. Everyone over either has CIDP or GBS. I'm not sure I can post the link on this board. E-mail me if you interested and I will give you the web address.
***@****
***@****
Many thanks to those who have responded. I'm acutely aware of the many links between oral infections and conditions like diabetes and heart disease. Many with CIDP report some type of acute infection, virus, or reaction to an immunization as the trigger. None of this occurred with me...except for the chronic tooth infection (my own fault...should have had it treated immediately). The CIDP developed slowly, and ironically, around the same time as I had this infection for quite a while. I can't help but believe there's a link and the infection caused antigens to be created that are now attacking the peripheral nerves. The fact that I have CIDP (slow & chronic) and not Guillain Barre suggests a slow process (chronic infection) rather than an acute virus. My bad tooth was on the left side...so is 80% of the sensory loss and weakness. I'm not qualified to diagnose neurological conditions, but sometimes, the simplest explanation is most often the right one! Now ther problem is finding doctor that will treat it as an acute infection...or at least try. A round of long term antibotics (actually several...this is how I understand some have had success) is a lot less expensive and dangerous than steriods, IVIG or plasmapheresis!
I am fortunate to have great neurologists - one in private practice and the other an academic. They are caring, concerned and professional. They work with me and answer all of my questions and NEVER berate or talk down to me. They quickly diagnosed the condition and started with very conservative treatment plans. I could not be luckier in this regard.
Please keep in touch. ***@****
I am fortunate to have great neurologists - one in private practice and the other an academic. They are caring, concerned and professional. They work with me and answer all of my questions and NEVER berate or talk down to me. They quickly diagnosed the condition and started with very conservative treatment plans. I could not be luckier in this regard.
Please keep in touch. ***@****
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