I am a new member recently diagnosed with CIDP and about to start my IVIG loading dose tomorrow. I am crossing my fingers for positive results.
My symptoms started in late November with transient paresthesia-like symptoms that eventually moved up my limbs and turned into constant weakness.I am mobile, but with a walker. I think I have had most of the common symptoms except little pain thankfully (no reflexes, stairs, buttons, bottle-caps challenging, voice change). A few have me curious if others experienced as well:
- Metallic taste (during initial progression- now gone)
- Cold stiff fingers (Constant now- my hands used to swell and sweat- they don't anymore)
- Frostbite like feeling with even warm water- my body turns red and legs get weaker- I almost have to shower in luke warm water.
Have any of you had these symptoms and/or have you seen them subside?
It's so nice to have this forum. Your life quickly changes to a new normal and I am not sure what that is.
I had frost like feelings in my feet. The pain was intense. I had to have my feet wrapped in warmed towels. For hours. It took about a month to go away. They are still dumb but the pain is gone.
Yes, yes, and yes, but first WELCOME! I know you will find a lot of support and people who are experienced and ready to assist you through the landmine which is called CIDP. The cold feelings, the color changes, and the deep feeling of losing your body heat were not diagnosed by my neuro but by me after sharing my symptoms online in this forum! THEN my doc agreed. Read EVERYTHING you can get your hands on from major medical sources, Mayo, Vanderbilt, Cleveland Clinic, etc. Ask tons of questions. Don’t be intimidated by the medical community. I hope you get terrific results from your IVIG. Do hydrate the day before, the day of, and the day after to minimize chances of headaches etc. If tylenol and benadryl are offered, take it. It helps a lot. If not, ask your doc.
Good Luck, Geepster
BTW my “frostbite” symptoms were falsly Dx as Raynauds Phenomenon!
I went from weakness in the limbs to using a walker to being bed-ridden. CIDP has weakened my diaphragm and my tongue - I talk like I've had a stroke, used a breathing machine 10 hours/day and all my food is pureed. I was receiving IVIG biweekly with little to no results. During my last hospital stay my neurologist decided to guinea pig me so now I get 5 infusions one week, then one the next week so now I receive about 12-14 infusions every month. This has worked for me as now I can move my arms again, I no longer require a breathing machine and my talking and swallowing are MUCH improved.
Watch the intervals I was weekly and my veins would colaps now every two weeks and my insurance covers home health so I get mine at home, the IVIG that is. Hydration benadryle and Tylenol are important premeds.
Dontlet them push the rate to fast unless your system handles it. I max at 100 or I break out… I take cymbalta and 1800 mg of gralise time release neurontine along with hydrocodine .in the evening 600 mg of Gabepentine a and hydrocodine as well as another cymbalta. I funtioning Brett well.
Feet tingle and little feeling same with lower arms . I don’t feel temperature very well. Joint pain and muscle weakness . I am awoken in the hands and feet. My summers are best soaking up sun by the pool under the misters . You realy have to find what works for you. Welcome aboard. I am sorry you have CIDP but this site has been most helpful to me. Robert ; )(
I am so sorry Chris. I am glad you are starting to see improvement.
Thanks all for sharing.
You definitely start to feel crazy explaining some of these symptoms, especially before diagnosis:)
Yes to almost everything.....I especially remember the metallic taste, and thinking "now this is just crazy - I'm losing it" I always felt like I went to my GP with a laundry list of issues that made no sense and couldn't be related....it took time and lots of doctors but now I know they were related, and are very real. Good Luck. We're here for you!
Yes, I am sorry for you, but also glad to hear this as I have experienced a myriad symptoms that I can only put down to CIDP.
Reynaud's is one of them and is absolutely hideous, one drop of cold water and that's it. My mum has been a nurse for 40 years and after feeling my hand she said it was worse than a corpse! I often cut or yank my fingers without realising and I'm increasingly dropping things. Not a lot of fun.
Bring on the summer!
My nails now grow fast/strong and I read that can be a sign of poor circulation. This makes sense if Raynauds is a secondary issue. The symptoms seem to describe it.
My nails are hard as nails and difficult to cut. My hands are always freezing so I sit on them while watching TV. Raynaud’s is probably one of the protean manifestations of CIDP rather than a separate issue in CIDP patients. I have recently been diagnosed with peripheral vascular disease IN THE SAME DISTRIBUTION AS MY CIDP! A coincidence, I think not. So much we don’t know. So much the docs don’t know and are sometimes not even open to. Sometimes when Drs. (I am one) get fixated on a Dx they think is correct despite all the pieces that don’t fit, they are like a train going down the wrong track. Wrong but immoveable! Ask: What is lse could it be? What if I don’t get this treatment? Why do you treat aome of my aymptoms and not the reat? They are all making me miserable.
When you find a good Neuro , Hospital, or Center, recommend it, he/she here please.
Sorry for your diagnosis, but welcome. CIDP is a snowflake disease...no 2 patients are the same. You need to hydrate yourself really good today and tomorrow PRIOR to your infusion to help minimize side effects. If you get a headache or stiffness or become cold during your infusion, ring the nurse so she can slow down the infusion rate. Good luck!