Reply To: Hello from Houston

Hi Amaris and fellow Houstoian, thanks for responding. I just signed up for my wife and I to attend the April Houston Chapter meeting. Sounds like you have done pretty well since being diagnosed, coming back from being in a wheel chair. Sounds like the ivig was just what you needed. I just finished my 4th infusion. Hard for me to tell how it is doing. I had the treatment on Friday and had very sore legs over the weekend, the worst they have been since it first started but much better today. Comes and goes. Do you mind if I ask who your neuro is? My guy was with a group called the Neurology Center on Main Street but he has decided to join Baylor and I haven’t been able to reach him for almost a month. I don’t mind following him to Baylor but feel he left me high and dry. So I may be shopping around. You mentioned leg tightness and that was one thing I do notice when my legs hurt the most, my skin seems extremely tight. I also have been trying skin products to help with the nerve pain (although it is more irritation than pain) and for the muscle pain. I think I stumbled on a good cream, called Sombra, a natural pain relieving cream. Kinda pricey but wow does it work on the sore muscles and lasts quite a while. I would rather do creams or gels than pain meds but I will take an occasional tramadol, only 50mg if needed. My infusion nurse thinks I am doing well and cautioned me that the 6 the month mark is the first real test marker. I am also wondering about physical therapy. Did you do any pt? Jeff