New Member & looking for insight/help
AnonymousAugust 29, 2007 at 12:14 pm
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.
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.
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!
AnonymousAugust 29, 2007 at 1:08 pm
Im not a doc, but I can sympathize with you, because the process finding many diseases is the sit and wait until there are enough symptoms to call it this or that approach. This is a long process for most of us. My CIDP began as numbness in the tips of my pinkies. I hear that it usually begins in the feet for most cidp’ers. I was dxd by a neurologist I was referred to, and he sent me to Mayo Clinic in Rochester MN. They agreed it was cidp, so there is was not much doubt after that. The usual treatment is IVIG, and it works very well for most. A good doc may give it to you on an educated guess to see if it helps you or not. Sorry you had to find us under these circumstances, but you are always welcome here, and maybe somebody can come along behind me and give you the answers you need.
AnonymousAugust 29, 2007 at 9:37 pm
Thanks for the encouragement. I wonder if others have had the negatives with tests like me, but later things came out differently. That is the most frustrating. I know I have weakness, exhaustion, some numbness, muscle pain, yet EMG’s have been normal along with bloodwork. My one doc did say it can take time to show up. I am hoping somebody else will respond to me with the same problem I have had. At the moment I feel alone.
AnonymousAugust 29, 2007 at 11:26 pm
Hi Heather and welcome to the forum.
I don’t think I can offer much help as I waited about 5 years before I finally went to the doc. Just thought my leg problems was from working on my feet all day. It was not until my hands were in so much pain that I finally gave in and went to the doc. (Funny cause I had a 20 year career working for docs)
Anyway, I saw a family practice doc whom ordered some random blood studies- neg, xrays- neg. Then he suggested an MRI to rule out MS. Not having any secondary health coverage, I suggested a referral to a neuro first, in hopes I would not need the test and save money. (I was already on permanant disability and had medicare from another disability so money was tight)
I did see the neuro whom performed an nc/emg on me at the next visit which showed the demylination. He also ordered the MRI just to rule out MS and additional blood studies- all neg. He set up a lumbar puncture as well. When he did the LP it showed elevated protein in the spinal fluid. That along with the nc/emg, and the history of my symptoms, length of time they been occuring, he confirmed my diagnosis. CIDP. I then began a variety of treatment.
I currently get plasma pheresis 6 days a month, every month and use a walker to get around.
Anyway, I don’t think that will help you much, but that is basically my story and I wanted to welcome you to the site and let you know you are not alone. Many, most, times it takes awhile to diagnose CIDP. I think mine was quick, simply because I waited so long that it was well established.
So welcome to the site, and I am sure others will be along to offer some thoughts for you.
AnonymousAugust 30, 2007 at 11:00 am
Listen, you are definitely not alone. I have read many peoples experiences on here and you can go back yourself by going to the SEARCH button above and see for yourself that many people get confusing and frustrating guess work done on them before a diagnosis is made. Please do pace yourself, keep a journal of your daily symptoms and ask as many questions as possible. The most important thing is to trust yourself. What you are feeling and experiencing is real and valid. Whatever the diagnosis is, you are going to be experienceing life in a new and altering way and I hope this forum and agency provides you with the support and education that you will need. Let us know what transgresses. We really care.
AnonymousSeptember 5, 2007 at 10:13 pm
I get confused by the intermittent and progressive part of CIDP. First, I tend to be very literal about things, so I may just be missing the point. 😀
As I read the stories it seems like some people progress very slowly and others progress quickly.
My symptoms have never gone completely away. I have days where I am getting around better and then days where it is worse. It doesn’t seem to change daily, but I have a few good days, and a longer period of bad.
Can the IV steroids make it so a person feels better for awhile?
I don’t know that I understand how CIDP progresses yet.
Just looking for more insight.
AnonymousSeptember 6, 2007 at 3:51 pm
It’s saddening to hear of your plight. Sorry I can’t offer much but good wishes. Stick with your doc so long as they’re helping you. Try and remain positive… I’m a great one to be telling you this.
Keep in touch with the great folks here. They’re an abundant wealth of information. Although I try to read a bit here every day, it’s difficult in knowing what pain and troubles everyone is experiencing. More often than not I leave in tears without posting. Stay strong and get/be well.
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