Aa
'appears to fit criteria for CIDP'......
fr neuro's report(5/31)given space not evry word(lots to say/ask/desperate for answers/concerned:CONFUSED w/sx.+awful progrression+in PAIN!)...I'VE BECOME MY BODY'S ENEMY..why?
============================================R=right L=left
"very abnormal study gives evidenct to suggest fairly symmetric predominantly demyelinating peripheral neuropathy affecting motor/sensory nerve fibers.abnormalities to suggest predom. demyelinating-prolongation distal latencies/slowed conduction velocities/relative preservation of CMAP amplitudes. absent F-waves+H-reflexes likely due to proximal conduction block."
Findings:1)motor NCSs peroneal and tibial nerves bilaterally-prolonged distal latencies(per R 9.3msec/L 6.8msec,tib R 8.4msec/L 7msec)slowed conduction velocities(35to42m/sec)small CMAP amplitudes(per R 3.8mV/L 3mV/tib R 2.9mV/L 2.6mV)Femoral motor NCSs bilaterally absent compound muscle action potentials L median,ulnar,radial motor NCSs -prolonged distal latencies (med 4.8msec,ul 4.6msce,rad 4.9msec)slowed conduction veloc(39 to 43m/sec)small CMAP amplitudes(med 5.8mV,ul 6.3mV,rad 4mV). 2)peron/tib F-waves absent bilaterally.H-reflexes absent bilaterally.L med+ulnar F-waves absent. 3)sural and lateral femoral cutaneous sensory NCSs bilaterally-absent sensory nerve action potentials.antidromic sensory NCSs L med,uln,rad nerves-prolonged distal latencies (med 3.8msec, ul 3.5msec,rad 3.9msec)slowed conduction velocities/small SNAP amplitudes." jst had brain mri(speech/word/writing difficulties)14th myelogrm/CT whole spine.POSSIBLE WHAT? WHERE CAN I GO FOR ANSWERS?......help pls
============================================R=right L=left
"very abnormal study gives evidenct to suggest fairly symmetric predominantly demyelinating peripheral neuropathy affecting motor/sensory nerve fibers.abnormalities to suggest predom. demyelinating-prolongation distal latencies/slowed conduction velocities/relative preservation of CMAP amplitudes. absent F-waves+H-reflexes likely due to proximal conduction block."
Findings:1)motor NCSs peroneal and tibial nerves bilaterally-prolonged distal latencies(per R 9.3msec/L 6.8msec,tib R 8.4msec/L 7msec)slowed conduction velocities(35to42m/sec)small CMAP amplitudes(per R 3.8mV/L 3mV/tib R 2.9mV/L 2.6mV)Femoral motor NCSs bilaterally absent compound muscle action potentials L median,ulnar,radial motor NCSs -prolonged distal latencies (med 4.8msec,ul 4.6msce,rad 4.9msec)slowed conduction veloc(39 to 43m/sec)small CMAP amplitudes(med 5.8mV,ul 6.3mV,rad 4mV). 2)peron/tib F-waves absent bilaterally.H-reflexes absent bilaterally.L med+ulnar F-waves absent. 3)sural and lateral femoral cutaneous sensory NCSs bilaterally-absent sensory nerve action potentials.antidromic sensory NCSs L med,uln,rad nerves-prolonged distal latencies (med 3.8msec, ul 3.5msec,rad 3.9msec)slowed conduction velocities/small SNAP amplitudes." jst had brain mri(speech/word/writing difficulties)14th myelogrm/CT whole spine.POSSIBLE WHAT? WHERE CAN I GO FOR ANSWERS?......help pls
Check out any website relating to "environmental illness", "multiple chemical sensitivity" . Doctors Alan Leiberman at www.coem.com in Charleston SC. and Dr. William Rea in Dallas Texas at www.ehcd.com and a book by Dr. Gloria Gilbare called "I was Poisoned by By Own Body". It sounds to me as if you have been poisoned by your round of meds and the possibility of further damage by other meds is highly likely. You may need to be detoxed.
Go to www.refreshinglyfree.com and read my story on the "About Us" page. I was very much like you but have been lucky enough to get away from mainstream medicine who tends to call you crazy if a pill will not fix you. I still believe in the AMA for certain illnesses but there are other ways.
I feel you will be enlightened even if you do not become a believer. I offer no advice just informational sites.
Good luck.
Go to www.refreshinglyfree.com and read my story on the "About Us" page. I was very much like you but have been lucky enough to get away from mainstream medicine who tends to call you crazy if a pill will not fix you. I still believe in the AMA for certain illnesses but there are other ways.
I feel you will be enlightened even if you do not become a believer. I offer no advice just informational sites.
Good luck.
Hi,
I agree that you should see a pain doctor. Just one thing to be wary of. There are two kinds of pain docs. One deals in pills and one deals in injections. You know, injections into the spine or joint, etc. They make a lot more money from this kind of treatment. Please check before you go in for your appointment to see which type of pain doctor you are going to see.
I have Lupus, Fibro,Arthartis, bi-lateral total knee replacement, Migraines (4-6 weekly), back surgery L4/5-l5-S1. Spondeolysis Akolyosis, (I butchered that!) and my latest is CIPD. I have pain in all of my joints, knees, low back and my feet have the most painful numbness I ever thought was possible. There are meds for nerve pain. Even if it only takes the edge off, it helps because you know you are doing something.
Good luck and best wishes,
travelinkaren
(we live full time in our motor home)
I agree that you should see a pain doctor. Just one thing to be wary of. There are two kinds of pain docs. One deals in pills and one deals in injections. You know, injections into the spine or joint, etc. They make a lot more money from this kind of treatment. Please check before you go in for your appointment to see which type of pain doctor you are going to see.
I have Lupus, Fibro,Arthartis, bi-lateral total knee replacement, Migraines (4-6 weekly), back surgery L4/5-l5-S1. Spondeolysis Akolyosis, (I butchered that!) and my latest is CIPD. I have pain in all of my joints, knees, low back and my feet have the most painful numbness I ever thought was possible. There are meds for nerve pain. Even if it only takes the edge off, it helps because you know you are doing something.
Good luck and best wishes,
travelinkaren
(we live full time in our motor home)
Its somewhat difficult to interpret your description of your problem, sorry
Any comments on your NCS results are limited as I do not know the quality of the study or the visual appearance of the waveforms or your age, or the lenght of time of your symptoms or the results of a needle EMG, which are critical to know to interpret the study.
By most normal values, the only definite abnormality in the lower extremities is the prolonged distal latency of the RIGHT peroneal and tibial nerve. The other values are within normal limits of some labs, femoral nerve conductions can be difficult to obtain (which may be the reason they are absent), and absent sural responses are common after the age of 50 years.
The upper extremity responses are mildly prolonged. The velocities I cannot comment on as they are calculated very variably from arm measurements. I cannot tell if there is conduction block without knowing more of the data.
To meet criteria for CIDP you must have amplitudes that are <80% of the lower limit of normal or latences that are prolonged more than 120% of the upper limit of normal in more than one nerve (roughly speaking) with prolonged F wave responses. While you may seem to meet some of these criteria, absent F waves is more difficult to interpret than prolonged F waves as the issue coul be technical, and your amplitudes and velocities are close to normal.
CIDP is a disorder where your peripheral nerves lose their myelin insulation sheath and become slow - causing mostly weakness and some sensory symptoms in usually most of the peripheral nerves. It is thought to be caused by an immune process and is treated by medications to suppress the immune system like steroids or IV immunoglobulin.
In order to get a better idea of your peripheral nerve physiology by EMG and NCS, either discuss the findings with your doctor or get a second opinion - one can be obtained from the Neuromuscular Specialists at the Cleveland Clinic if you so wish
Good luck
Any comments on your NCS results are limited as I do not know the quality of the study or the visual appearance of the waveforms or your age, or the lenght of time of your symptoms or the results of a needle EMG, which are critical to know to interpret the study.
By most normal values, the only definite abnormality in the lower extremities is the prolonged distal latency of the RIGHT peroneal and tibial nerve. The other values are within normal limits of some labs, femoral nerve conductions can be difficult to obtain (which may be the reason they are absent), and absent sural responses are common after the age of 50 years.
The upper extremity responses are mildly prolonged. The velocities I cannot comment on as they are calculated very variably from arm measurements. I cannot tell if there is conduction block without knowing more of the data.
To meet criteria for CIDP you must have amplitudes that are <80% of the lower limit of normal or latences that are prolonged more than 120% of the upper limit of normal in more than one nerve (roughly speaking) with prolonged F wave responses. While you may seem to meet some of these criteria, absent F waves is more difficult to interpret than prolonged F waves as the issue coul be technical, and your amplitudes and velocities are close to normal.
CIDP is a disorder where your peripheral nerves lose their myelin insulation sheath and become slow - causing mostly weakness and some sensory symptoms in usually most of the peripheral nerves. It is thought to be caused by an immune process and is treated by medications to suppress the immune system like steroids or IV immunoglobulin.
In order to get a better idea of your peripheral nerve physiology by EMG and NCS, either discuss the findings with your doctor or get a second opinion - one can be obtained from the Neuromuscular Specialists at the Cleveland Clinic if you so wish
Good luck
dj,
Like you I just kept all of my problems to myself trying not be a "crybaby" and then I strted surfing the net looking for people who were dealing with simular problems. No one has the same story but we are all miserable souls looking for not only help, but empathy and the knowing that we are not alone while everyone else is living normal healthy lives.I found a message board that I visit daily and have found such wonderful people there that have helpped me to deal with things. It is such an active board that it almost seems more like a chat room. If you like it's at www.messageboard.spinehealth.com/
There are all types of problems addressed there and it just offers a support that we need while going through our messes.
I myself had spine surgery last year and am in more pain now that before the surgery with doctors that tell me to just deal with it. This is as good as its gonna get. I am refusing to accept that and am now sceduled to see yet another doctor next week. I am following my gut and refusing to listen to the ones that just can't find something to cut out of me so they send me on my way.
Get the answers you need and don't stop til you do. If they say they'll call you back, say no, I need help right NOW Not tomorrow, not next week. Make them see you. Make them deal with you. Who cares if they think you are overbearing or rude. Let them walk a mile in your shoes and see how kind they are.
I'll keep checking here to see how you are and I hope you will give that message board a try. I'll keep my open for posts from you there.
Good luck, and be strong. JoAnna
Like you I just kept all of my problems to myself trying not be a "crybaby" and then I strted surfing the net looking for people who were dealing with simular problems. No one has the same story but we are all miserable souls looking for not only help, but empathy and the knowing that we are not alone while everyone else is living normal healthy lives.I found a message board that I visit daily and have found such wonderful people there that have helpped me to deal with things. It is such an active board that it almost seems more like a chat room. If you like it's at www.messageboard.spinehealth.com/
There are all types of problems addressed there and it just offers a support that we need while going through our messes.
I myself had spine surgery last year and am in more pain now that before the surgery with doctors that tell me to just deal with it. This is as good as its gonna get. I am refusing to accept that and am now sceduled to see yet another doctor next week. I am following my gut and refusing to listen to the ones that just can't find something to cut out of me so they send me on my way.
Get the answers you need and don't stop til you do. If they say they'll call you back, say no, I need help right NOW Not tomorrow, not next week. Make them see you. Make them deal with you. Who cares if they think you are overbearing or rude. Let them walk a mile in your shoes and see how kind they are.
I'll keep checking here to see how you are and I hope you will give that message board a try. I'll keep my open for posts from you there.
Good luck, and be strong. JoAnna
j, what can i say...you do sound jst like me..and a fighter like me as well. i read your post a few times b/c i'm sure you know there's times when you need to connect w/otr people (something i've never been good at) who understand and even words over the net go a long, long way in impacting someone's day, month, life. i've been checking out the net for a while, trying to find answers, info, anything (b/c you know how much most docs jst LOVE to answers questions). that's how i found this place and took me a while to post. glad i did though and will definitely chk the otr place out...thank you!
you sound like you've been thru a lot of sh-- w/the medical profession too...sure we could swap lots of "experiences" and "truths". you have to let me know how you make out w/the doc you're going to see.
i don't know why so many have such a problem w/dealing w/pain and meds for it. esp. when it's LEGITIMATE! i don't want to be on pain or ANY medication the rest of my life but i sure as hell need it rite now and if that's called "drug seeking", well, ya know what?....then it is - i'm/we're/so many/ are in PAIN that's not "all in your head" and DON'T have a hx of substance abuse or addiction problems. i did a lot of research on that whole subject itself (pain meds,etc). sorry, this gets me going plus can't take my add med b/c of myelogram/ct tomorrow (not looking forward to).
i hope this doc turns out to be the one who'll help you. if not, bust his/her leg and tell em to jst "deal w/it".
the AMA "Principles of medical ethics" which are "standards of conduct which define the essentials of honorable behavior for the physician." #1. A physician shall be dedicated to providing competent medical care, with compassion and respect for human dignity and rights.
i think a lot of docs out there were asleep for this part in med school. i know i sound bitter....it's justified but i also know that there are some good docs out there who CAN be empathetic. they jst seem few and far between...rare.
so, i'd say off my soapbox for today except i couldn't get on one if i tried. you keep me informed and i'll catch ya on the other site too. you're not as good as a pain pill rite now but ya come damn close. i'll leave w/this last quote:
"i would say that the principle contribution made
by my doctor, and possibibly the conquest of my
illness, was that he encouraged me to believe that
i was a respected partner with him in the total
undertaking"
dj
you sound like you've been thru a lot of sh-- w/the medical profession too...sure we could swap lots of "experiences" and "truths". you have to let me know how you make out w/the doc you're going to see.
i don't know why so many have such a problem w/dealing w/pain and meds for it. esp. when it's LEGITIMATE! i don't want to be on pain or ANY medication the rest of my life but i sure as hell need it rite now and if that's called "drug seeking", well, ya know what?....then it is - i'm/we're/so many/ are in PAIN that's not "all in your head" and DON'T have a hx of substance abuse or addiction problems. i did a lot of research on that whole subject itself (pain meds,etc). sorry, this gets me going plus can't take my add med b/c of myelogram/ct tomorrow (not looking forward to).
i hope this doc turns out to be the one who'll help you. if not, bust his/her leg and tell em to jst "deal w/it".
the AMA "Principles of medical ethics" which are "standards of conduct which define the essentials of honorable behavior for the physician." #1. A physician shall be dedicated to providing competent medical care, with compassion and respect for human dignity and rights.
i think a lot of docs out there were asleep for this part in med school. i know i sound bitter....it's justified but i also know that there are some good docs out there who CAN be empathetic. they jst seem few and far between...rare.
so, i'd say off my soapbox for today except i couldn't get on one if i tried. you keep me informed and i'll catch ya on the other site too. you're not as good as a pain pill rite now but ya come damn close. i'll leave w/this last quote:
"i would say that the principle contribution made
by my doctor, and possibibly the conquest of my
illness, was that he encouraged me to believe that
i was a respected partner with him in the total
undertaking"
dj
You don't sound crazy! You sound miserable. I have no answers for you except to seek a Pain Management doctor for the appropriate meds or treatments to deal with the pain. Also seek advice about the depression this mess has left you in. Don't give up. Keep looking for the answers you need! Good luck!
ya know, sometimes you don't realize what a few words from someone can do to somehow i guess validate or jst perspective. i dunno but thank you, thank you, thank you. dealing w/this sh--(dont know rules on here) on your own, never thought it'd get to me...and it's starting to after all this time....****, maybe i'm human after all!! maybe i can get more writing (well, taping, can't write...can't hold the freaking recorder either!) but finish up what i started...book or not, dunno yet.
hey, i'll start rambling on rite now about anything. have that mylegram/ct/something(?) tues and can't take adhd meds b/c hosp said risk of seizure anyway and meds on list of like may add to it. not looking forward to it at all and trying to find out as much as i can about it or anyone whose had it done.
did call pain center near me and have phone no. for neuro to call and they will set me up w/in 2 weeks of that. called neuro's office last thurs. b/c can't take pain lots of days and crying (and i don't cry...don't know what's doin that to me). on hold 15 minutes...then s/one else picks up...go thru it again...they'll call friday...never did. so calling tomorrow. if they won't give me something they can at least call that place!!!
sorry, told ya, rambling on here. when i just wanted to thank you for what you wrote. really helps...mean that. and if you want to...fill me in on whatever you're dealing with. up to you ok? ok, i'll shut up now or shut "down" i guess. dj
hey, i'll start rambling on rite now about anything. have that mylegram/ct/something(?) tues and can't take adhd meds b/c hosp said risk of seizure anyway and meds on list of like may add to it. not looking forward to it at all and trying to find out as much as i can about it or anyone whose had it done.
did call pain center near me and have phone no. for neuro to call and they will set me up w/in 2 weeks of that. called neuro's office last thurs. b/c can't take pain lots of days and crying (and i don't cry...don't know what's doin that to me). on hold 15 minutes...then s/one else picks up...go thru it again...they'll call friday...never did. so calling tomorrow. if they won't give me something they can at least call that place!!!
sorry, told ya, rambling on here. when i just wanted to thank you for what you wrote. really helps...mean that. and if you want to...fill me in on whatever you're dealing with. up to you ok? ok, i'll shut up now or shut "down" i guess. dj
i am new to this forum and neurological problems. i apologize for question being difficult to probably read. trying to get so much in and nowhere/noone to turn to. frustrated and tho staying optimistic since this began now nervous/little scared as losing "control" of my body -which is hard for a self procliamed control-freak.
since oct 04 w/side effect of medication that progressed to er in nov. and inpatient in dec. for what looked like a stroke (including slurred speech, right side almost paralysis, atrophy, muscle wasting, couldn't stand, walk, balance on my own, write, read (letters,jumbled) and many, many other sx. i was about close to a vegetable. and severe back pain.. though no doctor believed me and shrink said "conversion"? disorder. (he will get a copy of nda and manufacturer's info on drug..everything is on there.
saw specialist rite after hosp.who said see neuro IMMEDIATELY....off that medication b/c his words "poison to me". got off it myself, some things went away, some didn't. not to make this long and boring....finally saw neuro april 6...found problems w/exam, set up for 5/31 test, extensive bloodwork done. one psssibility was als.
i've gone from being always active to fighting to be able to hold cup of coffee. muscle contractions, muscle beyond spasms, tremor or shaky, pain..can't sleep, eat. gone from mostly rite side to more and more left. never know what will strike, when, how. it even hurts to be touched or wear a slipper or a wrinkle in clothes. i know, it/i sound crazy and won't list other things happening now.
i don't know what else to do. tried to get info to make sense of this from doctor(s), can't take pain much more (said they don't treat pain)..just tried neurontin..bad side effects. can't take any anti-seizure medication (hypersensitivity), allergic to tricyclics (and w/add medication not good anyway).
is it so wrong to ask for some kind of traditional PAIN PILLS? i know it's nerve-related..not supposed to work but they do and i am trying..can't take much more...
i'm sorry for rambling and complaining. i'm not an emotional person and lately...well, I have to make sense of this, get an answer and do whatever to fix it. thank you if anyone can relate or about this myelogram tst or anything.
since oct 04 w/side effect of medication that progressed to er in nov. and inpatient in dec. for what looked like a stroke (including slurred speech, right side almost paralysis, atrophy, muscle wasting, couldn't stand, walk, balance on my own, write, read (letters,jumbled) and many, many other sx. i was about close to a vegetable. and severe back pain.. though no doctor believed me and shrink said "conversion"? disorder. (he will get a copy of nda and manufacturer's info on drug..everything is on there.
saw specialist rite after hosp.who said see neuro IMMEDIATELY....off that medication b/c his words "poison to me". got off it myself, some things went away, some didn't. not to make this long and boring....finally saw neuro april 6...found problems w/exam, set up for 5/31 test, extensive bloodwork done. one psssibility was als.
i've gone from being always active to fighting to be able to hold cup of coffee. muscle contractions, muscle beyond spasms, tremor or shaky, pain..can't sleep, eat. gone from mostly rite side to more and more left. never know what will strike, when, how. it even hurts to be touched or wear a slipper or a wrinkle in clothes. i know, it/i sound crazy and won't list other things happening now.
i don't know what else to do. tried to get info to make sense of this from doctor(s), can't take pain much more (said they don't treat pain)..just tried neurontin..bad side effects. can't take any anti-seizure medication (hypersensitivity), allergic to tricyclics (and w/add medication not good anyway).
is it so wrong to ask for some kind of traditional PAIN PILLS? i know it's nerve-related..not supposed to work but they do and i am trying..can't take much more...
i'm sorry for rambling and complaining. i'm not an emotional person and lately...well, I have to make sense of this, get an answer and do whatever to fix it. thank you if anyone can relate or about this myelogram tst or anything.
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