New to Forum and need suggestions/insight
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August 29, 2007 at 12:05 pm
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 -
August 29, 2007 at 1:03 pm
Hi Heather and Welcome.
Like you said, everyone seems to present a little differently with CIDP. Mine was primarily weakness, hands then legs. Also, I have relapsing/remitting type, so it would come and go on it’s own. The progression was also pretty slow, so it took me a while to come out of denial and seek a diagnosis and treatment. In my case, the dx was CIDP and the treatment has been IVIG, which has been a miracle in my case.
However, there are a lot of neuromuscular conditions that cause very similar symptoms, so it’s important to get the right tests done as soon as possible so that appropriate treatment can be administered — a “shot in the dark” approach could do more harm than good. I’m glad you’re going to see a specialist. I hope things work out for you. This is a great forum and I’m sure you’ll find all the support you need, with or without a diagnosis.
Caryn 🙂
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August 29, 2007 at 8:31 pm
Sorry I can’t be of much help, just wanted to send prayers. My son is 3 and came down with CIDP about 5 months of age, therefore, I don’t know what it feels like, since I don’t have it.
Keep searching. I think one of the most important things if having a dr. who will listen and wants to get to the bottom of things. Someone who says, “i’ve been thinking of you and think we should do…….”.
I wish you the best of luck.
Lori -
August 29, 2007 at 10:10 pm
Hi Heather, Welcome to The Family. I’m between dx myself, my pcp says its CIDP, while one neuro says GBS, and yet other drs say its in my mind. I’m going to the U of M(michigan) for a dx soon. It is frustrtaing to say the least, but not hopeless. Keep a positive attitude and live life to your fullest. Take Care.
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August 29, 2007 at 10:35 pm
Thanks for the encouragement. I’d love to hear other people’s onset of symptoms.
Heather -
August 30, 2007 at 5:37 am
hi heather & welcome,
since your doc is willing to try prednisone, ask him to try ivig. it is the Rx for several neurological Dxes. take care. be well.
gene gbs 8-99
in numbers there is strength -
August 30, 2007 at 9:59 am
From your post I cannot tell if it is CIDP or not. My symptoms began on March 17th 2002 with severe upper back pain at night, then my upper back went numb. On March 27th I woke up with numbness in my hands & feet. My legs started to get weaker after that & I would often fall down stairs without knowing why. Then by April 27th I woke up unable to walk, had lost the use of my hands & my entire body was numb. But I was an extremely case, with a rather rapid onset. I was originally dx with GBS, but by the middle of May it was changed to CIDP.
CIDP usually presents symmetrically, what happens on one side is also happening on the other. Normally begins with some kind of peripheral neuropathy starting with numbness & weakness of the hands & feet, progressing up the arms, to the elbows, then to the shoulders, etc. Same with the feet, it then moves up the legs… Most often it includes both sensory loss as well as motor function or weakness of the limbs. But it can also be just one or the other, many do not lose feeling, just strength.
CIDP is best treated with IVIG, but steroids also work oftentimes. The only thing that you said that made me think it might not be CIDP is that steroids made you worse. Many neuros are now trying prednisone or solumedrol (IV infusion of steroids), as the first choice of treatment. That is probably due to the high cost of IVIG. CIDP usually does not get better without treatment, there is the relapsing/remitting form which will respond quite well to treatment, then there is the progressive form, which usually just continues to get worse, slowly, but most do not get much back after they have lost it.
Pam -
August 30, 2007 at 9:20 pm
Heather,
Sorry to hear of your troubles. I can relate quite closely on most counts regarding your symptoms, as I’m sure many here can as well. Don’t have much to offer in the line of advice but to try and seek out the best of the best in neurologists.
Although my cidp was diagnosed almost spot on, there’s not much offered me in regard to help. My neuro passed away last year and I’ve not been back to see anyone else. No IVIG for me. They didn’t want to open my immune system and it wasn’t viable in my particular case.
Things are pretty much as they were a year ago and I can live with that. I still drive and occasionally ride my motorcycle when feeling up to it. I walk with no assistance but carry a cane in the car. Just been too self conscious to use it. Maybe it would be better than folks thinking I’m drunk. Cops would have a blast with me at a sobriety check. Something to look forward to perhaps.
It gets very frustrating at times knowing there’s nothing they can do other than monitor my condition. Don’t need a lot of help there. I suppose if I got really disgusted I could go back to Westchester and let ’em play with my jello like they wanted to a couple years ago… I think I’ll not give that a second thought.
Your situation may be different, everyones is. I wish you luck in your recovery. Just try and be strong as you can. God bless.
Mike
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