New Member & looking for insight/help

I’m new and realize I posted this on the main, but wanted to post it on the CIDP. Forgive my fixing–it may take me a bit to figure the forum out.

Hi,
my name is Heather and I am 40 years old and have had some health issues going that my doctor suspects CIDP, but can’t diagnosis it. I am hoping that the experiences so many of you have had will help me gain some insight as to whether CIDP could be what is going on with me. Sorry for the length, but I tend to be a very thorough person. I’ll try and break it down.
[B]First: Shoulder falling asleep-for many months[/B]
It is difficult to know exactly when symptoms began because as I read the symptoms I may have experienced things years ago, but I am not sure. My story really begins this past year. I noticed when I was sleeping, my shoulder would always fall asleep and therefore wake me up. I thought it might be my mattress, so we finally purchased new mattresses. That helped some, but then my hands began to bother me.
[B]Second: Swelling-[/B]
I noticed I was swelling in my hands and ankles a lot which is not something I normally experience.
[B]Third: Hand Problems–May[/B]
I had stiffness and tingling that would happen in the mornings. My doctor put me on prednisone for a week and a water pill. The stiffness, pain, and swelling went away after a few days, but returned shortly after being off the meds. Then, they tested me (EMG) for carpal tunnel and I only showed mild in my right hand, but my ortho decided I might benefit from some OT since my shoulder was also bothering me.
[B]Fourth: Hand weakness and OT therapy-June[/B]
I did 3 weeks of OT therapy. My OT luckily tested both right and left hands and shoulders for strength. During my therapy, the tingling & numbness became constant. I had stiffness in the AM, and my hands hurt. At the end of the 3 weeks when tested I lost significant strength in both hands. The right was the hand she was working on, but both lost strength. I went from gripping 30 lbs. in my left to 5lbs. and 9lbs. to 3 lbs. in my right. The shoulders and arms showed a little decrease and the numbness was worse, too.
[B]Fifth: MRI’s, EMG’s,hospital-July[/B]
I ended up with a few MRI’s w/ contrast and EMG’s to see what was going on. They didn’t know if it was MS or Guillian-Barre or maybe CIDP. MRI’s had spinal tap, EMG’s,and MRI’s were basically showing nothing, but my symptoms kept getting worse.
[B]Sixth: Steriod IV 500 MG for 3 days–Mid-July[/B]
They did a steriod treatment on me IV and I think I got worse–or I was just getting worse. During treatment, leg weakness began to set in and became very bad. I was in and out of the hospital because again they didn’t know what was going on. It got to the point where walking was very difficult, stairs were impossible. Fatigue also began to set in. I had no energy or desire to do anything–very unlike me. I had significant sensory loss on all extremities. More blood tests showed nothing. Another EMG–showed little.
[B]Seventh: How I am now–7 weeks after OT was completed-end of August[/B]
My symptoms seem to change. Now, the tingling is gone in my hands and the numbness is better. However, my legs fall asleep even while sitting or laying down at times. I have muscle pain I didn’t have before. Fatigue is a little better, but not great. My hands hurt and arms if I play piano too much or use them too much. Legs–especially my right thigh hurts if I walk too much. I get cramping at times, too.

[B]Last: [/B]I had an autonomic test done and am awaiting results, but know they probably found some loss in my feet. I am also on to an actual neuro-muscular specialist in another week or so. My doctor also hasn’t had me driving because of the weakness in my legs. I tried yesterday out of necessity, but feel I need to limit it. My legs tired very quickly.

I know CIDP can present so differently. Do my symptoms sound like it or does somebody have another idea? It is very frustrating as I am sure so many of you know. I don’t know what to expect day to day. It seems I am a little better, but I am also not doing what I normally do everyday. I am lucky that I work out of my home and can rest and pace myself. I don’t know what I would be like if I did business as usual.

I greatly appreciate any insight or help anyone can give.

I’ve been tested for viruses, lyme’s, MS, and boat-load of other stuff with the spinal tap, and with blood work–all negative at this point.

Thanks so much!
Heather