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Does anyone have any idea what I have?
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Hi Dan. My Neuro Muscular Disease specialist's name is Dr. Ned Pruitt. Very Good Doctor. He is also a Neuro Muscular Disease teacher at the Medical College of Georgia. Laurel is pretty dead on about how CIDP is diagnosed. My protein levels were actually pretty normal. Most often than not, protein levels are elevated, but not 100% of the time. The EMG & Nerve conduction study, along with your physical exam, really make the determination of CIDP. The EMG & Nerve Conduction Study will show demyelination of the myelin sheath around the axon of your nerves. I have went through a slew of tests to get a definite diagnosis. I think the right Doctor plays a huge role in the game of "what do I have?"
Laurel,
Thank you for the info. I have a few questions for your husband.
1) How old was he when his disorder started? I am 32
2) Did it start in his upper or lower extremities first? Mine started in my upper (hands & arms)
3) What was the pattern? Up one arm then the next arm. One leg then the next leg. Or did it go up one leg & arm on the same side & then start on the opposite side. Or did it just hit him in different areas sporadically? Mine started in my right hand & bicep then my left hand & bicep. That's as far as it has gotten so far, thath I can tell.
4) How fast did it progress? Mine started in May 2007. It has been pretty progressive.
5) Has he had any pain associated with it? I have had some aching in the areas of atrophy. I have also had tingling from time to time in all 4 limbs. Also, I have a burning pain in my right upper thigh (Nerve pain)
6) How long was it before he noticed some benefit from the IVIG? It has been 3 weeks today since my 1st IVIG.
Thanks for the info,
Brian
Thank you for the info. I have a few questions for your husband.
1) How old was he when his disorder started? I am 32
2) Did it start in his upper or lower extremities first? Mine started in my upper (hands & arms)
3) What was the pattern? Up one arm then the next arm. One leg then the next leg. Or did it go up one leg & arm on the same side & then start on the opposite side. Or did it just hit him in different areas sporadically? Mine started in my right hand & bicep then my left hand & bicep. That's as far as it has gotten so far, thath I can tell.
4) How fast did it progress? Mine started in May 2007. It has been pretty progressive.
5) Has he had any pain associated with it? I have had some aching in the areas of atrophy. I have also had tingling from time to time in all 4 limbs. Also, I have a burning pain in my right upper thigh (Nerve pain)
6) How long was it before he noticed some benefit from the IVIG? It has been 3 weeks today since my 1st IVIG.
Thanks for the info,
Brian
Peg B
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HI Brian,
Whatever I have is slow. I first got IVIG 2 days in a row. Each does took about 6 hours but I don't know how much I get, never asked. Since then I get it for about 6 hours every two weeks. I get increasingly tired the second week and really seem to need by the time it is due. However, my finger is still bent and sometimes I can move it. A second finger is beginning to curl on my right hand and I cannot touch my tumb to the palm of that hand. There are people with MMN who do not respond to IVIG at all. The Docs are moving more toward MMN and not toward ALS because of my response to IVIG.
Hope this helps you. Take Care, Peg
Whatever I have is slow. I first got IVIG 2 days in a row. Each does took about 6 hours but I don't know how much I get, never asked. Since then I get it for about 6 hours every two weeks. I get increasingly tired the second week and really seem to need by the time it is due. However, my finger is still bent and sometimes I can move it. A second finger is beginning to curl on my right hand and I cannot touch my tumb to the palm of that hand. There are people with MMN who do not respond to IVIG at all. The Docs are moving more toward MMN and not toward ALS because of my response to IVIG.
Hope this helps you. Take Care, Peg
laurel
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Hi Brian,
I asked my husband to respond to your questions.
1) He was probably around 50 yrs. old when some symptoms started. He is now 60 yrs. old. He is a retired airline pilot. At about age 50, he began to notice that he had trouble with toggle switches when flying--uncoordinated and losing strength. He procrastinated and didn't bring these symptoms up with me or his doctor until about age 54. He was referred to a neurologist who did EMG and nerve conduction studies, and told him there was nothing to worry about. 2 years later he had begun to notice muscle atrophy in his right hand at the base of his thumb. He was referred back to the neurologist who once again did EMG and nerve conduction tests. He diagnosed Carpal Tunnel Syndrome and referred him to a surgeon in 2005. He supposedly had two nerve impingements --one near his wrist and one in his mid-point of his lower arm and had nerve release surgery in those two areas. He continued to lose function in that right hand to the point of not being able to use it. He had pronounced atrophy of the hand --it looks very small with no muscle tone and his lower arm is atrophied as well.
Interestingly, out of frustration we paid to go to a specialist referral clinic as we are in Canada with long wait lists to see specialists. Within five minutes of seeing the specialist who was an arm surgeon, he said that my husband had progressive muscle atrophy and needed to see a neurologist ASAP. Husband went back to the original neurologist who did EMG and nerve conduction tests and then thankfully referred him to the neuromuscular disorder clinic at our largest hospital. The neurologist there right away suspected CIDP and repeated all of his tests, but in a much more thorough manner i.e. she tested all of his limbs instead of just his right arm.
1) His condition started in his right arm, and that was the only thing he noticed. However, his nerve conduction studies picked up deficits in all 4 limbs. The most severe impairment was in the right arm.
2) My husband is probably in denial out of fear. He does not comment on anything concerning this diagnosis until something major evidences itself. Shortly after his tests at the neuromuscular disease order clinic and before he started any treatment, he experienced foot drop in his right foot. Luckily he began IVIG about two weeks after that symptom and the foot drop has never returned. But I do detect a slight change in his gait when he walks. At our Dec. 7th appt. when he was given a firm diagnosis of CIDP, we listened to the technicians talking among themselves and learned that the nerve conduction studies had picked up severe deficits in that right foot in July. So I guess it was predictable to them that he would have some gait disturbance shortly.
3) There doesn't really seem to be a pattern with him. I would say that it is hitting sporadically.
4) I would say that his progression has been over about 7 years with an intensity of symptoms starting in about 2004 which resulted in fairly rapid atrophy and loss of use of his right hand.
5) He has no pain per se, but has had major spasms in his right hand to the extent that his fingers will spasm closed like you would see with a person with cerebral palsy. He has some tingling in all fingers on both hands. He says it feels like it would if you slapped your hand on something and then have the resultant tingling. He gets restless legs and occasional leg spasms, but nothing like has happened with his right hand thus far.
6) He noticed benefit from the IVIG with 48 hours. He noticed less spasm and a little strength. He did notice on one occasion that around the 3 week mark after receiving IVIG that he began to lose a little strength in that hand. Brian I have read that some people with CIDP don't notice a response until 6 to 8 weeks after getting their first IVIG so don't give up on it yet.
He says to tell you to drink lots of water on the day before you get IVIG and to take a couple of Tylenols and a Bendryl on the morning of the treatment. And to remember to drink lots when you get home. This prevents headaches which can be quite bad if you don't hydrate enough prior to getting the IVIG. The Bendryl prevents any rash that could happen.
His doctor is switching him slowly to Imuran because in our medical system doctors are encouraged to get patients off IVIG ASAP due to the cost. So now he has to take a high risk immunosuppressant to appease the government when he has done really well on IVIG.
Laurel
I asked my husband to respond to your questions.
1) He was probably around 50 yrs. old when some symptoms started. He is now 60 yrs. old. He is a retired airline pilot. At about age 50, he began to notice that he had trouble with toggle switches when flying--uncoordinated and losing strength. He procrastinated and didn't bring these symptoms up with me or his doctor until about age 54. He was referred to a neurologist who did EMG and nerve conduction studies, and told him there was nothing to worry about. 2 years later he had begun to notice muscle atrophy in his right hand at the base of his thumb. He was referred back to the neurologist who once again did EMG and nerve conduction tests. He diagnosed Carpal Tunnel Syndrome and referred him to a surgeon in 2005. He supposedly had two nerve impingements --one near his wrist and one in his mid-point of his lower arm and had nerve release surgery in those two areas. He continued to lose function in that right hand to the point of not being able to use it. He had pronounced atrophy of the hand --it looks very small with no muscle tone and his lower arm is atrophied as well.
Interestingly, out of frustration we paid to go to a specialist referral clinic as we are in Canada with long wait lists to see specialists. Within five minutes of seeing the specialist who was an arm surgeon, he said that my husband had progressive muscle atrophy and needed to see a neurologist ASAP. Husband went back to the original neurologist who did EMG and nerve conduction tests and then thankfully referred him to the neuromuscular disorder clinic at our largest hospital. The neurologist there right away suspected CIDP and repeated all of his tests, but in a much more thorough manner i.e. she tested all of his limbs instead of just his right arm.
1) His condition started in his right arm, and that was the only thing he noticed. However, his nerve conduction studies picked up deficits in all 4 limbs. The most severe impairment was in the right arm.
2) My husband is probably in denial out of fear. He does not comment on anything concerning this diagnosis until something major evidences itself. Shortly after his tests at the neuromuscular disease order clinic and before he started any treatment, he experienced foot drop in his right foot. Luckily he began IVIG about two weeks after that symptom and the foot drop has never returned. But I do detect a slight change in his gait when he walks. At our Dec. 7th appt. when he was given a firm diagnosis of CIDP, we listened to the technicians talking among themselves and learned that the nerve conduction studies had picked up severe deficits in that right foot in July. So I guess it was predictable to them that he would have some gait disturbance shortly.
3) There doesn't really seem to be a pattern with him. I would say that it is hitting sporadically.
4) I would say that his progression has been over about 7 years with an intensity of symptoms starting in about 2004 which resulted in fairly rapid atrophy and loss of use of his right hand.
5) He has no pain per se, but has had major spasms in his right hand to the extent that his fingers will spasm closed like you would see with a person with cerebral palsy. He has some tingling in all fingers on both hands. He says it feels like it would if you slapped your hand on something and then have the resultant tingling. He gets restless legs and occasional leg spasms, but nothing like has happened with his right hand thus far.
6) He noticed benefit from the IVIG with 48 hours. He noticed less spasm and a little strength. He did notice on one occasion that around the 3 week mark after receiving IVIG that he began to lose a little strength in that hand. Brian I have read that some people with CIDP don't notice a response until 6 to 8 weeks after getting their first IVIG so don't give up on it yet.
He says to tell you to drink lots of water on the day before you get IVIG and to take a couple of Tylenols and a Bendryl on the morning of the treatment. And to remember to drink lots when you get home. This prevents headaches which can be quite bad if you don't hydrate enough prior to getting the IVIG. The Bendryl prevents any rash that could happen.
His doctor is switching him slowly to Imuran because in our medical system doctors are encouraged to get patients off IVIG ASAP due to the cost. So now he has to take a high risk immunosuppressant to appease the government when he has done really well on IVIG.
Laurel
Laurel,
Thank you so much for sharing your husband's information with me. I actually drank 1 1/2 gallons of fluid prior to the IVIG & woke up the next morning with the God awfulest headache that stuck with me for almost 2 days. I know what he means by that. I'm just looking for the day that I see improvement. Today, I can barely lift my right arm. It's so odd that it is primarily effecting my hands & biceps only. For example, I can't curl my arm up, but I can take 15 lb dumbells & press them over my head (shoulders) & do tricep excercises behind my head. So it seems that my triceps & shoulders haven't been effected. At least not to the point that my biceps & hands have. Weird pattern I guess. Anyway, yesterday was 3 weeks since my 1st IVIG & I have only declined. Hopefully I will see some benefit soon.
Thanks,
Brian
Thank you so much for sharing your husband's information with me. I actually drank 1 1/2 gallons of fluid prior to the IVIG & woke up the next morning with the God awfulest headache that stuck with me for almost 2 days. I know what he means by that. I'm just looking for the day that I see improvement. Today, I can barely lift my right arm. It's so odd that it is primarily effecting my hands & biceps only. For example, I can't curl my arm up, but I can take 15 lb dumbells & press them over my head (shoulders) & do tricep excercises behind my head. So it seems that my triceps & shoulders haven't been effected. At least not to the point that my biceps & hands have. Weird pattern I guess. Anyway, yesterday was 3 weeks since my 1st IVIG & I have only declined. Hopefully I will see some benefit soon.
Thanks,
Brian
Peg B
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HI Brian,
Following my initial treatment I had lots of side effects for a week. I finally called the Dr. and since then I not only get 2 benedryl and tylenol, I also get salumendral (sp?) which is liquid (IV) predisone (steroid) and compazine (for headache and stomach upset) I get these routinely prior to my IVIG and have not had any side effects except rosy cheeks (face) for one day. Best Wishes, Peg
ps. Did you chec k out what a disability leave (long or short term) means in your job? Is it bettler or worse than you thought? Have you made a decision on whether to go on leave or not at this time. Just being concerned and maybe nosy too. :-D Peg
Following my initial treatment I had lots of side effects for a week. I finally called the Dr. and since then I not only get 2 benedryl and tylenol, I also get salumendral (sp?) which is liquid (IV) predisone (steroid) and compazine (for headache and stomach upset) I get these routinely prior to my IVIG and have not had any side effects except rosy cheeks (face) for one day. Best Wishes, Peg
ps. Did you chec k out what a disability leave (long or short term) means in your job? Is it bettler or worse than you thought? Have you made a decision on whether to go on leave or not at this time. Just being concerned and maybe nosy too. :-D Peg
KRFowler1976
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Cidp
Hi, I have been dealing with CIDP for over a year now. I have had the spinal taps (more than one), bone marrow biopsy, nerve biopsy, ALL the bloodwork, CTScans, MRIs and my Drs (yes I have 2 neuros), Dr. Mitchell in Athens, GA and Dr. Rivner in Augusta, have said it is CIDP. I tried IVIG and it did not work. Then, my Drs had me go through plasmapheresis, and then Rituxin, and now we are trying the IVIG again since I have been on prednisone for over a year now. Mine started in my legs and them moved up to my arms and hands. It has been a rocky road and am now on disability because I can't walk. I really like both of my neuros, they have great, upfront with me, and honest. It's hard because it is so easy to think about this and get depressed, but no matter what I am determined to walk again. I am 31 years old and still have a lot to do in my life.
I am sending this to let you know you are not alone. I thought I was, but now I realize that I am sharing the same disease as others.
God Bless,
KIm
Hi, I have been dealing with CIDP for over a year now. I have had the spinal taps (more than one), bone marrow biopsy, nerve biopsy, ALL the bloodwork, CTScans, MRIs and my Drs (yes I have 2 neuros), Dr. Mitchell in Athens, GA and Dr. Rivner in Augusta, have said it is CIDP. I tried IVIG and it did not work. Then, my Drs had me go through plasmapheresis, and then Rituxin, and now we are trying the IVIG again since I have been on prednisone for over a year now. Mine started in my legs and them moved up to my arms and hands. It has been a rocky road and am now on disability because I can't walk. I really like both of my neuros, they have great, upfront with me, and honest. It's hard because it is so easy to think about this and get depressed, but no matter what I am determined to walk again. I am 31 years old and still have a lot to do in my life.
I am sending this to let you know you are not alone. I thought I was, but now I realize that I am sharing the same disease as others.
God Bless,
KIm
CindyM
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Hi Kim. Welcome to the forum. If you thought you were all alone in this, I am glad you found us. People stick together around here! I'm betting that you will walk again, too! :-D Cordially, Cindy
Reply from Brian
Kim,
Thank you for replying. I have been seeing Dr. Pruitt since November of last year. I am scheduled to see Dr. Rivner next Thursday. I have actually had an IVIG treatment today. I would like to talk to you over the phone if possible so I can see how you relate to my condition. I'm not going to give you my number over this site. I'll give you my email address and I can give you my number through email. I am married, have a son, and one on the way. I will be 33 on Monday and this disorder has been devastating to me and my family. If you are interested in sharing our stories with eachother then I am also willing. Here is my email address ( [email protected] ). You are not alone. Thanks for your reply.
Brian
Kim,
Thank you for replying. I have been seeing Dr. Pruitt since November of last year. I am scheduled to see Dr. Rivner next Thursday. I have actually had an IVIG treatment today. I would like to talk to you over the phone if possible so I can see how you relate to my condition. I'm not going to give you my number over this site. I'll give you my email address and I can give you my number through email. I am married, have a son, and one on the way. I will be 33 on Monday and this disorder has been devastating to me and my family. If you are interested in sharing our stories with eachother then I am also willing. Here is my email address ( [email protected] ). You are not alone. Thanks for your reply.
Brian
Hi, I have been dealing with CIDP for over a year now. I have had the spinal taps (more than one), bone marrow biopsy, nerve biopsy, ALL the bloodwork, CTScans, MRIs and my Drs (yes I have 2 neuros), Dr. Mitchell in Athens, GA and Dr. Rivner in Augusta, have said it is CIDP. I tried IVIG and it did not work. Then, my Drs had me go through plasmapheresis, and then Rituxin, and now we are trying the IVIG again since I have been on prednisone for over a year now. Mine started in my legs and them moved up to my arms and hands. It has been a rocky road and am now on disability because I can't walk. I really like both of my neuros, they have great, upfront with me, and honest. It's hard because it is so easy to think about this and get depressed, but no matter what I am determined to walk again. I am 31 years old and still have a lot to do in my life.
I am sending this to let you know you are not alone. I thought I was, but now I realize that I am sharing the same disease as others.
God Bless,
KIm
KRFowler1976
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Hello Brian, Sent you an email to see how your appointment was with Dr. Rivner. I know what it is like to have kids and go through this. It is hard, very hard. Happy B-Day!
Hi CIndy, Thanks for the support. I know that by the grace of God I will walk soon.
Kim ([email protected])
Hi CIndy, Thanks for the support. I know that by the grace of God I will walk soon.
Kim ([email protected])
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