harryswope

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  • November 21, 2013 at 12:35 am

    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.

    October 4, 2013 at 11:02 am

    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.

    October 3, 2013 at 4:09 pm

    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.

    October 2, 2013 at 11:52 am

    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.

    September 4, 2013 at 12:19 pm

    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?

    August 14, 2013 at 11:25 am

    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.

    August 11, 2013 at 9:37 pm

    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.

    July 26, 2013 at 11:43 pm

    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.

    July 14, 2013 at 2:19 pm

    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.