Wednesday, March 11, 2009

Sally's Story

I want to share an email I received from my new CIDP friend, Sally. She and I have shared emails and she writes about her CIDP experience below. I was honored when Sally contacted me as she has not communicated with others with this disease. If you would like to send her an encouraging note, please email it to me HERE and I will forward it on to her. Just wanted to post this because the unlikeliest of us benefit when someone shares their story. A special thank you to Sally for allowing me to share this!

Again, CLICK HERE to send Sally a note.

With hope,

In May of last year, I was suffering from a pulmonary disease that was later diagnosed by lung biopsy as Pulmonary Fibrosis, another rare disease. It's where the lung spontaneously starts scarring, which causes the lung tissue to get very stiff, and air can't pass through as it should. There is no real known cause, and, unfortunately, the only cure is lung transplant. That would be a long way off for me.... I went to Mayo Clinic, Jacksonville, Florida, for a regular appointment just prior to having the lung biopsy. I was complaining of weakness, numbness and tingling in my lower legs and feet, and forearms and hands.Pulmonology wanted to check it out before they did surgery, so they got me in to see a Mayo Neurologist that same day. Well, the docs did all kinds of nerve testing and a spinal tap, and pronounced me with Guillian-Barre. They then admitted me to the hospital (a brand new one at Mayo) and administered 5 days of IVIg. I have no idea what kind they were using. At any rate, I was CURED !!!, or so I thought. All the feeling came back into my hands and feet, and the tingling seemed to get better. I was instructed to be aware of the symptoms. and if they should come back, I was to contact Mayo again. Well, they did come back......about 6 weeks later I felt the tingly feeling in my hands again, so Mayo had me come back there for a 3 day dose of IVIg, which seemed to relive my symptoms. They discharged me on a "maintenance dose" of 3 days, once a month, to be done by home health because the local hospitals didn't have enough supply. I do know that home health was using GammaGuard. It did seem that just when it was about time for the infusion, I would have some return of symptoms, but not really significant, and it would always go away after treatment. Then I turned 65 (Ugh) in November and went on Medicare and a supplemental insurance policy. They would not pay for in home infusions, so I had to start going to our local hospital infusion center to get my treatments once a month. I have no idea what brand of IVIg they used, but I'm going to call today and see about getting copies of my records, which should show the brand name. None of my doctors have mentioned the Brand issue, and I find it very intriguing. Just last month, the treatment I had at the beginning of the month did not work, and I got no relief. In fact, I became weaker and weaker as the days went by. I returned to Mayo, and they felt I should try another infusion, since I had responded so well before, so that was accomplished within a few days. No response again....and great difficulty contacting my doctor at Mayo. I was so frustrated ! I've forgotten to tell you that I am on high doses of Prednisone for the Pulmonary Fibrosis, as well as the CIDP. I had a Pulmonary relapse in January, spent 5 days in hospital getting better, and was discharged on 60 mg Prednisone for 2 weeks, then 50 mg for 2 weeks, 40 mg for 2 weeks and now I'm on 30 mg. Will "step down" once more on Monday to 20 mg a day, and will stay on that dose for 6 months. My head looks and feels like a bowling ball, and I'm really having trouble with swelling. The weight gain is depressing for one who started out too heavy in the first place! I finally spoke with my doctor, and they have EMG testing scheduled for next Tuesday. He says that since the IVIg isn't working, there is nothing they can do for me if the testing doesn't show that I need further treatment. I asked about plasma-exchange and paraphrases, but he didn't even want to talk about it until I've had this testing done. I can't believe there's nothing they can do, and now that I know about the Brand issue and possibly having infusions more often, at least I can have a rebuttal for his "nothing they can do" statement. The worst symptom I have is extreme weakness in my knees, lower legs and feet. I have no feeling in the toes and the small ball right under my toes. I have no knee jerk reflex and no ankle reflex. I have a problem with balance, especially when turning around or turning to walk in a different direction. I do use a cane, and on bad days I use a rolling walker. I'm also on a long oxygen tube that can go throughout the house, so I must be very careful not to trip over that. I did have a fall yesterday.....onto soft carpet, Thank God! Just a little rug burn on my right knee and a couple bruises. It happened in our walk in closet when I tried to turn around to hang something on the rack. This is only the 2nd time I have fallen. My hands tingle a lot, and I've lost the dexterity in my fingers. Magazines slip out of my hands, and I drop things more often. I am currently doing Physical Therapy, but it's not going too well because I tire so easily. I feel like such a wimp....the exercises are not difficult, and I'm only up to 10 so far, but I just get so tired! (This is my second round of PT, and I requested it to try and keep my muscles in tone. I would like to go back to Pulmonary Therapy, but I can't walk on the treadmill right now (obviously). I'm going to start the Imuran when my husband gets home this weekend. (He's a retired physicist, who's following a life long dream of being a long distance truck driver......and he loves it!). I'm also to have an inhaled medication, Pentamidine, once a month the ward off the old PCP bug. I hope to be able to reduce the Prednisone even more one I get "settled" on the Imuran. Thank you for letting me "bend your ear". I probably should have put this on your blog page, but I've never done that before and not quite sure how to proceed. If you think it might help someone else, please feel free to cut and paste it there. Sincerely,Sally


Amanda said...

Thanks Sally that is nice to hear that you are doing better. Thanks for letting us all know now we can keep you in Prayer.

Jessica said...

Look into alpha lipoic acid. I just started and it has shown promise in some people. I'm in the same boat. Good luck Jessica