sorry , tried to put this on the status area and wuld not accept it lol
Phoned my Neuro today because the stinging sensations were getting worse She said they are part of CIDP she is putting me on Neurontin , First starting out for two weeks at nighttime and then to call her . I have been holding back on accepting meds as I am on so many for other conditions , I am going to take them to see if they will help
Mary
I sure hope they do. Let us know how it goes. We're all pulling for you!
Thank you Joe ,
I was wondering if anyone else is taking Neurontin and what they think ?
Mary
I took the Neurontin last night and slept all night and most of today. Not good:(
Maybe I should ask for it. I haven't slept well for a few years. Sleeping that long, probably not any of us are looking for though.
LOL Maybe once or twice Joe , But to tell you the truth I have decided not to take them again as I felt horrible . Maybe if I did not have anyone or anything to be awake for . I seem to be overly affected by anytype of 'sleepy' pill
Hopefully they do not affect too many the way they did me
Mary
Hi Mary,
I have those stinging sensations too and was prescribed neurotin. However, I usually avoid taking it if I can - have only taken it 5-6 times in about 5 months. The sensations I have usually go away after a while (even without neurotin).
Taking the Neurotin made my legs and ankles swell terribly. Slept with my legs up on pillows and finally had to be taken off Neurotin. Began having Restless Leg Syndrome times 1,000 and having great difficulty getting to sleep. Finally had Mirapex prescribed which is for Parkinson's Disease and Restless Leg. Have slept like all through the night since starting on the Parkinson's med. eI have only had CIDP since October 1, 2011.....
I understand why you are not taking it , I don't have the stinging todya but have oter Symptoms almost liek my circulation is being cut off It is driving me crazy ! Keep banging my foot on the floor . I am having my next IVIG treatment on Wednesday , I felt no improvement since last time , only worse:( I hate this disease !
newtocidp said:
Hi Mary,
I have those stinging sensations too and was prescribed neurotin. However, I usually avoid taking it if I can - have only taken it 5-6 times in about 5 months. The sensations I have usually go away after a while (even without neurotin).
Toni King Roberts said:
Taking the Neurotin made my legs and ankles swell terribly. Slept with my legs up on pillows and finally had to be taken off Neurotin. Began having Restless Leg Syndrome times 1,000 and having great difficulty getting to sleep. Finally had Mirapex prescribed which is for Parkinson's Disease and Restless Leg. Have slept like all through the night since starting on the Parkinson's med. eI have only had CIDP since October 1, 2011.....
Sorry to hear you had such abad affect from Neurontin Toni . I have had CIDP for nine or ten years was not diagnosed untill Sept. 2011 I was told my case was very complicated by My Neuro. I have a lot of wasting in my muscles as well as teh nerve pain , numbness , tingling etc . Also have very bad lower back pain for the last 6 months , Not sure if it ha sanything to do with CIDP
I am fes up with all of this but wont give up :)
Hey Mary....I am now going to have my two "booster" IVIG's tomorrow and Wed. that will be numbers 13 adn 14. My left leg is almost totally numb and I am dragging my left foot around. Not good....also,when I place my leg foot gently on the floor, it silently begins to move over to the right as far as the leg will go. that was rather spooky...so I moved up the IVIG.....Also, sorta on another subject....has anyone experienced HAIR LOSS>???? I have (rather had) great, thick hair that had to be thinned with each cut. It has now come out by the handsvul and is very thin. Do you think that the 20,000 donors to my IVIG is a bunch of old bald headed men? Shall I ask for Patrick Dempsey type donor in the future.
I am a colon cancer survivor from 1985 and with this new thing, I am beginning to feel like Job!
Mary said:
Sorry to hear you had such abad affect from Neurontin Toni . I have had CIDP for nine or ten years was not diagnosed untill Sept. 2011 I was told my case was very complicated by My Neuro. I have a lot of wasting in my muscles as well as teh nerve pain , numbness , tingling etc . Also have very bad lower back pain for the last 6 months , Not sure if it ha sanything to do with CIDP
I am fes up with all of this but wont give up :)
Hello Toni , I will pray they help you , I have mine on Wednesday and not a day too soon , I had no improvement with my last one and only added to the symptoms
You certainly have had a lot to bear Toni Have you wondered if you were related to Job :)
No problem so far with the hair , I too have thick hair ,
Take care Toni
Prayers Mary