Well, I've been on the prednisone for a few weeks now. Still not seeing a huge change in CIDP symptoms per se~ But I do welcome the relief from the joint pain that was adding to my discomfort in this. I didn't realize how much pain I was actually in til it began to subside. And that alone was huge for my attitude and well being. I saw My MD yesterday, and he's just a saint! We talked at length and he is in contact with my Neuro after each visit. I insist on that with them, as I see them both regularly and they are working together as a team on my case. Makes me feel better knowing that they both know what cards are being played here... no surprises. And they both agree, that though it's good that I am physically feeling better and that is a plus, they want to see the CIDP symptoms improve as well. Not starting the taper off the 60mg daily of prednisone as yet. I see Neuro next month and will see what happens then. Also, was so fortunate to be able to get Medicaid and apparently this will open the doors for other treatment opportunities, will wait and see. After this last 6 months of ifs and maybe's and I don't know, and Gee I'm sorry, but you cannot afford this, to having this card... I'm still having to pinch myself, I can't believe that something good is happening and eventually I'm going to wake up and find it was just a dream. But its becoming reality. Since starting on the prednisone, it flared up an infection from a cyst that I had carried around for some 20 years, so on two bouts of antibiotics later, it's almost healed. Yay! But in the process too, and having learned that prednisone does flare up infections at times makes me have to be very conscious of my health in other ways. Immune system is kind of low. For the last several days have been feeling like I'm on the edge of catching something... like cold flu like symptoms but not. Hot one minute, cold the next, sweating and achy, just generally feeling not well. At appointment had a low grade temp and Dr. checked my lungs and again put me on another antibiotic thinking I was possibly trying to cook some pneumonia. So there is that. But today I feel pretty good. I have a lot of things on the agenda today. Family and friends coming over to help me build and set up raised bed pallet gardens so I can get out and play in the dirt and make things grow and get the fresh air instead of being house bound. My balance is still an issue, I still have my numbness in both legs and I still am at risk of falling. But I can't just sit around and get bigger. ( prednisone is rearranging the fat furniture and I'm not happy at all about that. ) So I am being proactive in trying to gain in my activity and maintain or strengthen my muscles. I was given an exercise bike, so I can keep myself moving inside even on nasty weather days that will keep me house bound. It's a process. I'm getting there. One day at a time. Fighting a battle with my vanity. I don't recognize myself in the mirror with my face filling out. Very aware of my caloric intake and hoping that when I am done with the prednisone I will go back to being the woman I remember in looking in the mirror. I don't want to be seen the way I am... but at the same time, I can't just keep hiding behind the walls of this house either. I have to get out and do things. I have to feel productive. I've worked hard all my life. Always had something to do. Was always needed. I miss being needed and dread becoming a burden to anyone. My biggest fear. So I have incentive to keep up the fight of just living and doing what I want to do. ( A bit of stubborn can be a good thing. ) Today is going to be a good day. I can feel that in my bones. ( the one thing that so far I can still feel. )

After my visit with the MD yesterday, and him saying they want to see progress in the symptoms of the CIDP, I thought about it. And I do notice one change I didn't mention to the doctor and need to. For the last several months, I've been very adamant about my range of motion. Afraid of locking up and contractures from immobility and I've fought it hard. I was a Rehab/CNA for many years, so I know very well what I have to do to prevent freezing up. And I manually do range of motion daily, along with low impact exercise to keep what muscle I do have. While the numbness does persist, I am moving around more, and that is huge. But I also recall how stiff my toes were. I could move my ankles and feet but the shadow feelings of being tightly wrapped still plague me. My toes were stiff and would barely move. At times my big toes would just curl up and be stiff and contort. Well, I didn't sit still for that at all. And manually I did those toes every day too. I sit at the chair with my feet on the foot stool, and press my toes back and up over my foot as far as tolerated and hold them there, and release. Repeatedly daily. And now... I can wiggle my toes more, on their own power. That is different. That is a plus. So there is some improvement. And that makes me smile. Looking forward to a huge day today, and though I know I will pay for it probably, later on... Not going to dwell on that now. The sun is shining ... the rains have stopped. It's a bit chilly outside yet, but I have seeds and plants to get in the dirt today and I'm more excited today than I have been in a while. Thank you Lord! ~ Blessed Be my friends. :) Have a wonderful Memorial Day weekend.

The sun is shining here too. Have a great day.

Hello there my dear Michigan friend.... I don't have a lot of time at the moment, but I wanted you to know that I have joined the group. Briefly, my acknowledgement (or at least when I noticed things) was last June. My legs were hurting all the time and I was so fatigued. I thought I was dehydrated, low on B, low of exercising, etc. I tried everything....finally went to my Dr. in Sept who referred me to a Neurologist. By November and after all the necessary tests, she put me on IVIG infustions every 3-4 weeks. thank God for insurance. At 10,000 ech infustion it would be a treatment out of reach for me. It has helped somewhat. I am on 1800 mg of Neuronting/day, Naproxin, Xanax, Zoloft. I have finally applied for disability as I cannot workd at all. I have to take each day slowly and as the day progesses. Every once in a while I have a day of being normal and I feel like I have to hurry up and enjoy every moment....not so good....only makes the next day worse. Mostly in the lower half of my body, but most recently has moved to my forearms, hands and fngers.....all of the symptoms. It can get really depressing, but I just have to have faith and give my body the rest it needs. I will surely add more later, but on the way to my Dr. LOL talk soon. I live in Rochester Hills.

Hi Kristy, And thank you for writing. I admit I haven't hit this page much lately. Much on my plate these last few weeks. My mom had to have knee replacement surgery, and as my brothers are all up north and miles away, I am the one who gets to do the running, labor of love... she's my mom. But then she had heart issues they didn't know she had either so there were extra trips back and forth for that. She's got it all fixed now though and is going through rehab in a rehab facility so she can concentrate on healing and gaining strength in her knee now. So that is a good thing. I also have to keep tabs on my dad as well. In his 80's and finds he needs company and assistance in keeping his meds all in line so he doesn't make mistakes is something else I try to do, and all the while he thinks he's taking care of me. So its a win win for both of us. I have also joined a cidp group on Facebook and that has also been very helpful for me as it's daily responses and chatting with others also dealing with this disease. I invite you to join if you have not yet done so. It's a warm welcoming group and to me, all the access to all the information available to us is a plus. I'm still not able to get the IVIG as the Medicaid does not cover it, so my docs are working on other areas. I am now getting tapered down on prednisone which pleases me, I'm really tired of looking like a cow. I've gained some 40 pounds so far and have to keep my caloric intake down to under 1500 a day to maintain the weight I have and not gain any more. My face is all full and round and my belly is huge to me. Like I was pregnant big. I hate that too. But as I said, they are reducing my prednisone. I was at 60mg/day, down to 50mg/day and now down to 40mg/day. And I just had some blood work done today and next week will start Imuran if the tests come back okay. I guess they need a baseline before starting it, and they need to keep tabs on my liver enzymes. So will see what happens there after. One of the side effects from Imuran I have read, is weight loss, so I'm all over that! But apparently that is supposed to be a sign to report to the doctor as a serious symptom... Will see how it goes... I will report it if I have to.. but at this point, I may take my time in doing so. :P I live in Northern Michigan, up near the Mackinaw Bridge, so I don't have a lot of the treatment options available to me up here that those in more highly populated areas. But if I could get approved for the IVIG, I could get that done at the hospital up here. Just not in the cards for me at the moment. I am looking for clinical trials though, or other ways of funding it as it does seem to be the treatment of choice. I do feel myself losing strength... there are good days and bad days yet and many in the middle. I find that I am my most active in the mornings when I first get up. ( and I was never a morning person in my life!) But come about 2pm, I slow down and about 5 or 6 I am just done. That's it. The more I do, the more I am on my feet, the more I deal with back pain, and the more my feet and legs swell up and just make the most simple activity hard... if not impossible. Everything is just laborious and heavy to move around, and it wipes me out quickly. I sleep with my feet elevated on two heavy feather pillows at night though ( they don't give down under the weight of my feet and legs ) and by morning the swelling has come back down and I start all over again. Another day... another opportunity to try again. Have to keep positive. If you don't see me here often... again, I invite you to find me on Facebook... you will recognize my picture in there. Nice to meet you, and thank you for writing. ~ sis... Aka Tammy