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I was on Lisinopril for a short term , I get coughing from it and if I was still on it I could see it a cause of a relapse or at least making my cidp more intolerable.
I get tremors when I get upset or push my body to hard. The wave of tingling is not so bad now that I now what triggers them.
My neurologist just tru me a curve ball, instead of admitting me to hospital he wants me to travel 50 miles to get second opinion after I have had 2 plasma exchange sessions. This seems strange that he is not sure of my CIDP diagnoses after going through all the standard test, and that the plasma exchange works so well I just need it to last for more than 5 weeks.
My GP has taken over my CIDP treatments because neurologist is a little too uncaring and his staff is a joke. I have been keeping GP aware of my general level of weakness and I let him know when I need treatments, just a little red tape to go thru before I get admitted.
Jim thanks for responding, I want to do plasma therapy as a outpatient but not sure about the semi- permanent ports. The temporary ones are bad enough, how do the other ports feel, are the bothersome and how do they access the port?
rickd my cidp started as hand weakness then leg fatigue and of course balance issues along with sporadic sharp pains. I had 3 treatments over a 6 day period and I felt improvements rite away balance came back fast pain took a few days after treatments to end.I have made great progress since the treatments and based on my experience I would think plasma exchange will help you. I stayed in hospital for the treatments and was bored all the time 3 hours of treatments every other day made for a long week, I had a groin catheter I think that’s why I was not treated as a out patient.
Doc mentioned he might have me try the IVIG treatment next, I only had 3 plasma treatments in 1 week with no follow up treatments planned. I need to educate myself on the disability income not sure how much longer I can work.
Sarah my cipd started in December 2012, while splitting firewood my hands started slipping on the axe and carrying the wood indoors was getting harder. My doctor tried everything for 5 months(last thing was mri of the brain) then referred me to a neurologist who ordered a spinal mri both negative. My muscle weakness had progressed and I started limping, my neurologist then did the nerve conductivity test and a spinal tap which showed abnormal protein level his diagnosis is cipd but a mild variation.
I had the plasma therapy july starting on the 9th, I walked into the hospital with a cane and walked out without one. In the short time since the therapy my strength is back, limp is gone and i feel very good only problem is leg fatigue at work (8 hours standing sucks). I am lucky that my doctors responded to my symptoms quickly and got me the treatment I needed, hope you get results like mine, I truly endorse the plasma exchange I felt better 3 hours after 1st treatment.Hello everybody I just had first PE and have a positive response, feel better then I have in the past 4 months. I am newly diagnosed and wondering if anybody had gait problems and did they go away after PE.