Thanks BigTree for the encouraging words. I am letting the diagnosis settle and surprisingly I am not as freaked out as I thought I would be now that I have a plan. I am scared of the IVIG treatment and wondering what the side effects are and what it causes down the way long term – any major problems with being on IVIG for long term? But now I have to wait and see if my insurance company will cover the IVIG infusions. Paperwork has been submitted and I am waiting. I hope they don’t say no because I don’t have the biopsy to go on, only the results of the spinal tap. That would suck if they won’t let me get what my body needs. I have cut down the steroids in half and am already feeling better. I slept last night for the first time in two weeks and the motor feeling in my body is much less. Hopefully it is the pred causing some of these annoying symptoms and not the CIDP. I am trying to stay positive and not get too depressed for now. Hopefully I will respond to the IVIG infusion and be able to move on and have a remission of some sort.

I had a good meeting with my neuro today. I was diagnosed with CIDP – not a difinitive diagnosis but she really thinks that is what i have based on all my lab results and my lumbar puncture showing protein in the fluid. She wanted to do a nerve biopsy to confirm the demyelination – which i declined. From everything i read on the biopsy it is horrible and it causes permanent damage to the foot and sometimes permanent pain. So since that can also be negative leaving you with still no actual diagnosis I said no. Since the prednisolone is so horrible she decided to taper me off over the next week or so and stop that. We are going to try two IVIG infusions to start out and see how I respond. I am hoping this causes me to plateau off and not progress anymore. I am a little bit confused because I was reading my lab report from my Lumbar stick: Protein CSF, total (HIGH) 85 mg/dL (normal 15-45); IfG, CSF 6.1 mg/dL (normal <6.2); Albumin, CSF (High) 44 mg/dL (normal 14-25). The rest were all in normal range. She said that my test did show protein in my fluid stating that I am demyelinating. But when I read the test page at the bottom it says RESULT: study within normal limits. No evidence of a demyelinating disease process. Why would the report state this at the bottom if my Protein CSD and Albumin CSF were both high and the doctor said my proteins were high too? Should I be worried that she is interpertating my lab results wrong? Well I am sad to have the diagnosis of CIDP I am relieved that I can now hopefully state IVIG infusions and stop the progression. After talking to my neuro she put my mind more at ease and said that this is not a death sentence and that I should not go down the deep, dark path because most people live a pretty normal life with CIDP and have mild symptoms. I have hardly any symptoms right now, mild tingling in hands and feet and a little bit clumbsy with my hands lately. But nothing horrible. She thinks some of the new symptoms I am experiencing might even be caused by the prednisolone and might go away when the pred is done. Now I just have to calm down and try not to obsess about the fact I have this and get on with it.

I have my follow up appointment today at noon with my doctor to see what they found on my spinal tap. I have been in Florida all last week for a vacation and have been worried about what they are to find on the fluid results. I tried to have a normal vacation and put my health problem on the back burner since there was really nothing I could do to change my situation but it was hard. I have been on prednisolone 40 mg now for about two weeks. Now I am not sure if the weird feelings are from the pred or my disease progression (if I do indeed have CIDP). I feel very jittery and hyper all the time. My hands tingle now on the top of the hands and they feel very shakey. My knees hurt (in the joints) all day long but subside when I sit down for the end of the day. My legs also feel somewhat shakey too like I am on large doses of caffine. I can’t sleep at all and am having weird dreams when I do sleep (taking melatonin to help at night). Can someone share their thoughts on side effects of prednisolone with me? Now I don’t know if I am obsessing on every little weird feeling and making everything worse or if I am really having new side effects. I just want to be back to normal and not have this thing! Ugh!

thanks, that is encouraging. So far, so good. At work since 7 AM and no sign of a headache. I am trying to not move around too much and just sit at my desk for the day. I don’t know what causes the headache to come on but if it is movement then I am trying to keep mine to a minimum.

The lumbar punch was not bad at all. My doctor guided the needle into the spine with the help of an xray machine (floroscope). The most pain was the injection of lidocane. Then I felt some uncomfortable pressure in my back as he was inserting the needle. It took about 15 minutes for the CFS fluid to drip out slowly to fill the 8 cc needed. But then it was done. I stayed at the clinic for an hour laying on my back. I also downed a big cup of coffee and a diet coke for the caffine. Somewhere i read caffine might help stay off the spinal headache. Then I layed low for the rest of the day staying pretty much on my back. Today I am at work. Somewhat sore back but not unbearable at this point. I am worried I will get the spinal headache and won’t have a good time in Florida (I leave at 7 AM tomorrow morning). If i were to get the headache would it come on today or could it come on days down the way? Does anyone know. If I don’t get the headache today (one day after the tap) then am i in the clear and probably won’t get one? I would sure hate to get one once I am down in Florida.

Thanks for the encouragement. It helps to see that it is not always so horrible and that maybe my life won’t change so drastically.

I had my spinal tap yesterday. It was not bad at all. I was so scared that it would hurt very much. It was uncomfortable mostly. The doctor was very gentle and he used an xray machine called a flouroscope (sp?). It was cool because I could see him inserting the needle in my spine on the computer screen. He said this makes the procedure much less painful and less scary. Now I just have to wait and get the results.

I have never had a MRI of my spine, only my head. Should I ask for one if the proteins in my CSF fluid are negative to see if maybe there is possibly something going on in my spine causing the numb leg and fully gait.

I feel gittery today. My back aches and I have a very sore right leg, it feels like a bad charlie horse in my calve muscle. I just started 20 mg prednisolone this morning. Does anyone know if you can take Ibuprofin with prednisolone? I guess I should call the pharmacy before taking anything with the prednisolone.

I kind of want the LP to be negative for the proteins because then, just maybe i don’t have CIDP but then I kind of want a positive protein because then I have a real diagnosis and I can maybe start the IV drug infusion that I hear about that helps slow the symptoms. I just don’t know where to go after I get the results if they are negative. Do i just ignor the symptoms and hope the go away or do i keep insisting it is CIDP and ask to try and start the infusions?

Confused and still scared but feeling a little bit better. Now if only my back would stop aching. I have to get on a flight tomorrow morning at 7 AM for a much needed vacation in Naples, FL. I just hope I don’t get the spinal headache from the LP i had yesterday.