NeurontinJanet, I hope you get more help from the docs for your son and that he does get off the percocet easily. Please keep us posted on both of you. Janice
From: Janet Dunn Sent: Tuesday, May 18, 2010 1:00 PM To: 'Pieter and Heather' ; 'Robert Pall' ; [email protected] Subject: RE: [TMIC] Neurontin Hi Heather Thanks for asking. I just don't know what to think. After raising the TM alarm bells (significantly), the neurologist sent a letter to the family doctor, stating that the "problem" is organic in nature. That the pain is coming from the brain itself, and not from the spinal cord lesion. That he does have reduced feeling and strength. That he does have decreased sensation. That it is not TM and not MS, but he does not know what it is. Geesh, thanks for scaring the crap out of us. He does have a lesion at T2. He does have significant pain and weakness. They have put him on Baclofen 10 mg 2 times a day, and Carbamazepine CR 200mg twice daily. The goal being to manage the pain and to get him off of the percocet. The neurologist is hoping that he will heal, as he has youth on his side. Am I angry? Yes. Am I frustrated? Yes. This young man has been dealing with this for over a year now, and it has not gotten any better, and fortunately not much worse, other than the pain. The prognosis is just what I said: hopefully he will heal. You would think, that in this day and age, when we can do so much, that somehow they could figure out what is wrong with him. So, a big thank you to all of my TM family. While this is not TM (sorry for passing that on, but that was the info that I had) this is a Spinal Cord Injury. It does not change the tears that I have shed, and will shed. I am at a loss as to what to say, do or think. Janet From: Pieter and Heather [mailto:[email protected]] Sent: May 18, 2010 10:09 AM To: Janet Dunn; 'Robert Pall'; [email protected] Subject: Re: [TMIC] Neurontin Janet, How did your son make out at the doctors? Are they going to be putting him on some meds to help with his pain? This has to be just so hard for him. Heather in Calgary ----- Original Message ----- From: Janet Dunn To: 'Robert Pall' ; [email protected] Sent: Monday, May 17, 2010 10:45 AM Subject: RE: [TMIC] Neurontin Hi Rob. I couldn't take neurontin. I am on Lyrica, have been for four years now. 75 mg a.m. and 150 mg p.m. It has virtually stopped the banding, and the burning in the feet. I am actually going to lower the dosage to 75 twice a day. However, that has been delayed because of my "inability to pace myself" so I have paid for it with high pain levels in my legs - but not nerve pain. I am also taking effexor, welbutrin, and long acting oxycodone. I supplement that, as needed, with regular oxy during the day - so if the pain is high - then oxy during the day, or baclofen, - it is a tricky road so I monitor my symptoms constantly. I am seeing a pain specialist in Vancouver BC three times a year - he just writes a script for many months, and I fill as I see fit. That is how it works here in Fort St John. Now, with my son exhibiting what the neurologist is labeling TM, I have no idea what the doctor is going to do here in town. We will find out today - right now he is not managing his pain - he is simply coping with it - " I am tough, I can take it" (he is 15). He takes 2 percocet in the evening so he can walk the dog - he uses a cane. Good luck with the neurontin - my money is on the lyrica and the effexor - in combination they work wonderful. I do not know what is in Cymbalta, and honestly - I will google it asap. Janet
