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laurel
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CIDP versus ALS
Hi Tara,
I'm no diagnostic pro, but all the testing is similar i.e. EMG, nerve conduction studies, blood work, lumber puncture, neuro exam. etc. I think a big difference is often those with ALS have hyper refexes. And a good interpreter of the EMG is important. I have read that EMG results are very dependent on a good operator and interpreter. I know with my husband his first neurologist had antiquated equipment, and his realm of experience was not on par with the doctors at the specialized neuromuscular disease unit. Also, there have been several posters here who had a query of CIDP and were given a trial of IVIG with no beneficial results and they wound up with an ALS diagnosis. Wright who is our in house expert on EMG's could explain that part. I think often if the doctors are stymied they will try IVIG and look for a positive response as there are several autoimmune diseases that respond well to IVIG. But that being said I have read about several people with CIDP who didn't respond to IVIG and responded to Plasmapheresis. Perhaps there are some on the forum here who can speak to what was tried with them during the diagnostic process. I would really be interested in knowing if there are any who had doctors who did try anti virals and/or antibiotics.
Laurel
Hi Tara,
I'm no diagnostic pro, but all the testing is similar i.e. EMG, nerve conduction studies, blood work, lumber puncture, neuro exam. etc. I think a big difference is often those with ALS have hyper refexes. And a good interpreter of the EMG is important. I have read that EMG results are very dependent on a good operator and interpreter. I know with my husband his first neurologist had antiquated equipment, and his realm of experience was not on par with the doctors at the specialized neuromuscular disease unit. Also, there have been several posters here who had a query of CIDP and were given a trial of IVIG with no beneficial results and they wound up with an ALS diagnosis. Wright who is our in house expert on EMG's could explain that part. I think often if the doctors are stymied they will try IVIG and look for a positive response as there are several autoimmune diseases that respond well to IVIG. But that being said I have read about several people with CIDP who didn't respond to IVIG and responded to Plasmapheresis. Perhaps there are some on the forum here who can speak to what was tried with them during the diagnostic process. I would really be interested in knowing if there are any who had doctors who did try anti virals and/or antibiotics.
Laurel
sdsyd
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Hi there- just my two cents-
CIDP often has sensory issues,especially pain... which don't seem to be all that common in ALS. Also, CIDP often doesn't affect one limb or area at a time...they also commonly have orthostatic hypotension ( dizzy when you stand up due to blood pressure changes) as well as a decrease in reflexes, whereas people with ALS have hyperreflexes. I have worked in the field of OT for 10 years and have only worked with two patients with CIDP and a handful of those with Guillane Barre ( CIDP's acute version) and I have never worked with a person who had ALS, so any info I am giving you I have learned about ALS from research and this very forum. Both of the patients I worked with had severe pain to the lightest touch, both had orthostatic hypotension and both were quads. Laurel is right about the IVIG, though in some extreme cases of CIDP even IVIG doesn't help.
Hope this helps-
Cindy
CIDP often has sensory issues,especially pain... which don't seem to be all that common in ALS. Also, CIDP often doesn't affect one limb or area at a time...they also commonly have orthostatic hypotension ( dizzy when you stand up due to blood pressure changes) as well as a decrease in reflexes, whereas people with ALS have hyperreflexes. I have worked in the field of OT for 10 years and have only worked with two patients with CIDP and a handful of those with Guillane Barre ( CIDP's acute version) and I have never worked with a person who had ALS, so any info I am giving you I have learned about ALS from research and this very forum. Both of the patients I worked with had severe pain to the lightest touch, both had orthostatic hypotension and both were quads. Laurel is right about the IVIG, though in some extreme cases of CIDP even IVIG doesn't help.
Hope this helps-
Cindy
planningguy
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Cindy,
Have they discussed trying IVIG for you? Also, do you have brisk reflexes? Sorry to interject, but my neuro and other docs have never mentioned CIPD as a possibility. I was going to ask my neuro directly about it when my mito. study results come back. He humored with the Lymes test (apparently extremely rare in Wyoming, as in 1-2 cases documented he had ever heard of.), and he seems really open to suggestions, or will at least detail why he doesn't think it is something to pursue.
Robert
Have they discussed trying IVIG for you? Also, do you have brisk reflexes? Sorry to interject, but my neuro and other docs have never mentioned CIPD as a possibility. I was going to ask my neuro directly about it when my mito. study results come back. He humored with the Lymes test (apparently extremely rare in Wyoming, as in 1-2 cases documented he had ever heard of.), and he seems really open to suggestions, or will at least detail why he doesn't think it is something to pursue.
Robert
laurel
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And to add to Cindy's good info. Some CIDP patients don't have sensory issues at all. My husband is one of those, but he has an unusual CIDP variant. It is all enough to make you crazy <g>. He presented with profound atrophy of his right hand (it looks like Al's atrophied hand photos), and while being diagnosed he got foot drop in the right foot. No blood pressure issues with him, but he seems to have autonomic nervous system involvement with heat regulation being quite wonky. Most of the CIDP'ers on the forum do have sensory and pain issues. My husband has none, but he does have cramps and fasciculations. And for treatment they are often on various things. A big group has success with IVIG alone. Some require IVIG and immunosuppressants, some require Plasmapheresis and immunosuppressants. Some are treated with IVIG and pulse steroids or plasmapheresis and pulse steroids. It seems there are few clinical trials in on CIDP other than a big one with good success with Gammunex (IVIG). I think the next ten years will bring answers to ALS and things like CIDP.
Laurel
Laurel
sdsyd
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Robert-
No, they have never mentioned it, except for before all the myasthenia panles came back negative inlcuding the MUSK test. I do have quite brisk reflexes according to gp and neuro. I also have what-I don't know what I'd call it, but when I am sitting on a bleacher and the kid behind me stomps his feet on the wood, it makes me jerk with each "stomp"? This symptom happens in many other situations as well and only since my onset of initial symptoms. Several years ago
I got viral arthrits two times after an intial infection (strep throat, etc) then after that cleared- my joints wer so bad I was unable to walk. High dose steroid cleared both of these up in a matter of days. My neuro or GP don't seem to bat an eyelash when I told them that. Seemed important to me.
Laurel- how did they identify the CIDP in your husband? I hope he is is improving and I hope you are right in many new treatments coming soon!~!~!
Love,
Cindy
No, they have never mentioned it, except for before all the myasthenia panles came back negative inlcuding the MUSK test. I do have quite brisk reflexes according to gp and neuro. I also have what-I don't know what I'd call it, but when I am sitting on a bleacher and the kid behind me stomps his feet on the wood, it makes me jerk with each "stomp"? This symptom happens in many other situations as well and only since my onset of initial symptoms. Several years ago
I got viral arthrits two times after an intial infection (strep throat, etc) then after that cleared- my joints wer so bad I was unable to walk. High dose steroid cleared both of these up in a matter of days. My neuro or GP don't seem to bat an eyelash when I told them that. Seemed important to me.
Laurel- how did they identify the CIDP in your husband? I hope he is is improving and I hope you are right in many new treatments coming soon!~!~!
Love,
Cindy
planningguy
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Cindy - Thank you for the background and information.
Laurel - Thank you again for more regarding CIPD
I guess something just struck me about Laurel's comments about the rarer offshoot her husband suffers from, and how even with CIPD different treatments may need to be tried. When I was early into this and naive, part of me just wanted my doctor to hit me with "something".
Even now I sometimes wish a doctor would try something: antibiotics, anti-virals, or immunosupressants to see if there is a difference. My rational side reminds me that these treatments have real side effects, and that good medicine (ie I don't have a medical degree...) requires justification equal to the risk.
Quirky mood tonight... I'm going to blame our impending cold snap.
Best wishes,
Robert
Laurel - Thank you again for more regarding CIPD
I guess something just struck me about Laurel's comments about the rarer offshoot her husband suffers from, and how even with CIPD different treatments may need to be tried. When I was early into this and naive, part of me just wanted my doctor to hit me with "something".
Even now I sometimes wish a doctor would try something: antibiotics, anti-virals, or immunosupressants to see if there is a difference. My rational side reminds me that these treatments have real side effects, and that good medicine (ie I don't have a medical degree...) requires justification equal to the risk.
Quirky mood tonight... I'm going to blame our impending cold snap.
Best wishes,
Robert
laurel
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CIDP versus ALS
They did EMG and extensive nerve conduction, the lumbar puncture, MRI's, blood work, antibody testing etc. He had a slight protein elevation in his LP. And his nerve conductions were indicating demyelination. But I think really his neurologist waited with baited breath to see if he responded to the IVIG. She was perplexed with his lack of sensory symptoms and his presentation and with the severe wasted hand. He had almost immediate response in that he re-gained some strength in his right hand. Prior to IVIG, he had become unable to hold a coffee cup or use eating utensils. Probably about 2 yrs. prior to being diagnosed, he noticed difficult moving toggle switches when flying (he was an airline pilot before taking early retirement). The atrophy crept up on him. He is not too insightful or self observant. He got scared when he was trimming our horses hooves and could not hold the hoof knife. Even after his first couple of rounds of IVIG, the neuro. had some questions if it was CIDP. Now she calls it an unusual variant and he gets nerve conduction studies every 3 months.
He had a relapse in October--it was as though the IVIG did nothing and he lost strength in his hand again. The November treatment worked and brought back the strength--I would said he has about 60% normal strength in his right hand compared to about 10% in the beginning before the treatment began. However he has been dealing with almost debilitating fatigue. I am researching sub clinical infections as related to autoimmune diseases primarily due to the fatigue issues. He can correlate having a bad infection after having an intravenous pyelogram prior to onset of his CIDP. There is so much information out there about people having these persistent low level infections and the immune system going rampant. There is tremendous success being seen in people with Rheumatoid Arthritis, MS, Chronic Fatigue and Fibromyalgia who have been on long term doxycycline.
Anyway that is far more than you asked, but I get on a roll as sometimes I feel like I'm a medical researcher with all the searching of clinical trials etc. that I do <g>.
Lots of love and good wishes to you too Cindy.
Laurel
Hi Cindy,
They did EMG and extensive nerve conduction, the lumbar puncture, MRI's, blood work, antibody testing etc. He had a slight protein elevation in his LP. And his nerve conductions were indicating demyelination. But I think really his neurologist waited with baited breath to see if he responded to the IVIG. She was perplexed with his lack of sensory symptoms and his presentation and with the severe wasted hand. He had almost immediate response in that he re-gained some strength in his right hand. Prior to IVIG, he had become unable to hold a coffee cup or use eating utensils. Probably about 2 yrs. prior to being diagnosed, he noticed difficult moving toggle switches when flying (he was an airline pilot before taking early retirement). The atrophy crept up on him. He is not too insightful or self observant. He got scared when he was trimming our horses hooves and could not hold the hoof knife. Even after his first couple of rounds of IVIG, the neuro. had some questions if it was CIDP. Now she calls it an unusual variant and he gets nerve conduction studies every 3 months.
He had a relapse in October--it was as though the IVIG did nothing and he lost strength in his hand again. The November treatment worked and brought back the strength--I would said he has about 60% normal strength in his right hand compared to about 10% in the beginning before the treatment began. However he has been dealing with almost debilitating fatigue. I am researching sub clinical infections as related to autoimmune diseases primarily due to the fatigue issues. He can correlate having a bad infection after having an intravenous pyelogram prior to onset of his CIDP. There is so much information out there about people having these persistent low level infections and the immune system going rampant. There is tremendous success being seen in people with Rheumatoid Arthritis, MS, Chronic Fatigue and Fibromyalgia who have been on long term doxycycline.
Anyway that is far more than you asked, but I get on a roll as sometimes I feel like I'm a medical researcher with all the searching of clinical trials etc. that I do <g>.
Lots of love and good wishes to you too Cindy.
Laurel
laurel
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Trying meds.
One thing that I have learned by sitting in on all my husband's testing and evaluations is that the doctors seem to rarely be able to say 100% that a person has a certain disease. They equivocate all over the place. I think they fear trying things like antibiotics and anti virals as they think it will cloud the picture when they aren't sure of what the disease is. But when I watch shows like Medical Mysteries and see people near death's door and then voila they are suddenly improved because someone started them on a corticosteroid or antibiotic I get really peeved and think "sheesh you put this poor guy through months of hell wondering what was going on, and he has two days of steroids and he rallies round. Why not try it when you don't know and the person is deteriorating?"
Being a retired RN, I can get a little too cynical from all that I have seen in the medical profession, and I'm not afraid to try things. With five horses I have done a lot of doctoring on them over the years. I'm quite gung ho to try doxcycline on my older mare with the recent clinical trials of it on osteoarthritis in horses. I learned about the wonders of horse medications for human use from out vet. He turned us onto DMSO for muscle pain. It is a fascinating and controversial drug that works magic on the horses and humans. You'll have to read about that one Robert. Fascinating history. It must be the cold weather and the arctic front we are expecting on the weekend that is making me babble <g>. Take care and I am waiting to hear about you resolving your medical mystery.
Laurel
Hi Robert,
One thing that I have learned by sitting in on all my husband's testing and evaluations is that the doctors seem to rarely be able to say 100% that a person has a certain disease. They equivocate all over the place. I think they fear trying things like antibiotics and anti virals as they think it will cloud the picture when they aren't sure of what the disease is. But when I watch shows like Medical Mysteries and see people near death's door and then voila they are suddenly improved because someone started them on a corticosteroid or antibiotic I get really peeved and think "sheesh you put this poor guy through months of hell wondering what was going on, and he has two days of steroids and he rallies round. Why not try it when you don't know and the person is deteriorating?"
Being a retired RN, I can get a little too cynical from all that I have seen in the medical profession, and I'm not afraid to try things. With five horses I have done a lot of doctoring on them over the years. I'm quite gung ho to try doxcycline on my older mare with the recent clinical trials of it on osteoarthritis in horses. I learned about the wonders of horse medications for human use from out vet. He turned us onto DMSO for muscle pain. It is a fascinating and controversial drug that works magic on the horses and humans. You'll have to read about that one Robert. Fascinating history. It must be the cold weather and the arctic front we are expecting on the weekend that is making me babble <g>. Take care and I am waiting to hear about you resolving your medical mystery.
Laurel
ktmj
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Hi Cindy
Cindy, when you mention the patients that had CIDP you worked with were quads, are you referring to quadriplegic, or quadriceps, or something else.
What was their outcome after treatment? I've been wondering about CIDP myself simply because all my weakness issues (not clinical, but I feel the changes) seem to be symmetric in all limbs, and it is moving faster than I would like for sure.
No sensory issues other than a burning sensation at times in one hand (very fleeting and not persistent).
Thanks for any more input.
Cindy, when you mention the patients that had CIDP you worked with were quads, are you referring to quadriplegic, or quadriceps, or something else.
What was their outcome after treatment? I've been wondering about CIDP myself simply because all my weakness issues (not clinical, but I feel the changes) seem to be symmetric in all limbs, and it is moving faster than I would like for sure.
No sensory issues other than a burning sensation at times in one hand (very fleeting and not persistent).
Thanks for any more input.
awieleba
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Cindy~
You mention that you had reactive arthritis/aka-rieters. I had this also after and during my infection in the colon last winter. Did you get tested for the hla-b27 arthritis gene? IF not maybe you should? I guess I dont even know if it would make a difference or not. Just a thought...
You mention that you had reactive arthritis/aka-rieters. I had this also after and during my infection in the colon last winter. Did you get tested for the hla-b27 arthritis gene? IF not maybe you should? I guess I dont even know if it would make a difference or not. Just a thought...
planningguy
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CPID Stands for Chronic Inflammatory Demyelinating Neuropathy. Short answer is that it occurs whe the immune system attacks the nerves in the arms and legs. However, as Laurel has illustrated, there are variants that can have a number of related symptoms.
Robert
Edit: Oops Ktmj has faster fingers than me
Robert
Edit: Oops Ktmj has faster fingers than me
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