Hello from Phila! I have the lovely diagnosis of CIDP and Primary IgA Deficiency. CIDP came on very slowly with a pregnancy in late 2010. Miscarried at 8 weeks. Numbness and tingiling progressed. Diagnosed with idopathic CIDP and told to come back in a year to re-eval. Symptoms became worse before the year. Arms and legs now numb, as well as the tip of my nose. Neuro started me on Octagam 5% induction dose 4 days. Had Privigen last week as a booster and will continue 120g a month for 3 mo then a re-eval. In the meantime My labs were positive for Hypogammaglobulinemia. Immunologist also said continue with IVIG. I also have this "smell of a dirty diaper" in my nose. It comes and goes and have not found a specialist who can address this. Im wondering if it comes when Im having a flare up of...
my CIDP. BUT...IM NOT QUITE SURE WHAT A FLARE IS?? Saw a hemo/oncologist today who is running more labs..something about para proteins. I will see a Rheumatologist on Friday to see what her thoughts are as well. This is all very new to me and Im researching as much as I can and being evaluated by just about evey specialist. Eye exam was 100% perfect from the specialist. As an added bonus, just getting up from the couch on Monday, my foot was so numb it just didnt register me getting up. I went down hard and fractured my navicular bone! ...so that added one more specialist to the list. So if anyone has advice, ideas,anything to share that may guide me to finding answers, I would be very happy to hear. Thank you and I hope YOU feel better :)
At this point, you probably should be using a walker or wheelchair. The numbness and weakness are a safety issue since you can’t feel your feet. Your insurance should pay for these. You have a lot going on- maybe more than just CIDP. When I have flares, many systems are affected. I don’t smell dirty diapers but my smell and taste buds are changed. My eyes sometimes can’t focus and have ringing in my ears. Numbness is pronounced to where I can not feel below my knees or elbows. Fatigue is extreme. We all react in different ways. Keep on IVIG unless doc says its not working. Mine took a few months to work completely. There are other treatments but that one is usually standard. See other docs to rule out other problems and research. I would recommend getting a second opinion also so you can be sure everything is being done. Good Luck!
Although I've never had a "flare" with my nearly 3 years with CIDP, some days/weeks are better than others. I would say a "flare" would be a severe worsening of the symptoms you had prior to treatment. CIDP victims seems to have a common pattern of therapies (IVIG, steroids, Neuropathic drugs-Neurontin, Lyrica, etc) but we seem to have varied patterns of symptoms. Too long to list but usually including those you mention. I agree with the walker and anything that provides you safe ambulation until you get everything under control. Don't be afraid to ask for a 2nd opinion. Check with your insurance so you aren't surprised by a new set of bills to pay. Am so sorry about you breaking a bone. My primary symptom is weakness in my feet. So I can identify somewhat with a broken foot bone. It will be no fun and hope you quickly heal.
My advice to you is to get to a place that has much experience with CIDP. Perhaps Mayo Clinic. That's where I went after I ended up paralyzed from my chest down. Early intervention will make the difference of the rest of your life. I am walking a little with a cane and braces. I was told I would never walk again- but I proved them wrong. Bottom Line- do what you need to do to get to the very best facility to get you started on the right treatment program. Don't think you cannot afford it. Because you cannot afford not to. Borrow, sell things, re-mortgage your home, whatever it takes. One thing for sure- You become your best advocate- cuz no one else will. I am living proof of what happens when you depend on the local medical professionals that have no clue. They just don't have the expertise in dealing with things like this. And by all means, protect yourself now- get some ankle braces, a walker, cane; have bars put in your bathroom and shower. Seriously, I am talking from experience. I fell multiple times, fractured several ribs, and ended up with more injuries as well.
Have you had any clotting issues? My first round of IVIG left me with dvt in shoulder and multiple pulmonary emboli. Doc, hasn't tried it again.
mdolich said:
I agree with Mashrub. When I have a relapse (or flare up) I start to feel the tingeling and numbness in my feet & hands, and it starts to climb up my legs and arms. I also get very fatigued. I get IVIG every three weeks because of past relapses, and I have been for the last six years now. I was on Privigen when I was going to the University Medical Center, but now that I go to the VA hospital they give me Gamunex-C. I was first on Gammagard but it didn't work very good for me, then they put me on Privigen and I had a good response to it. Now I'm on Gamunex-c and it also works good for me.
I guess I don't have an official diagnosis yet. My doctor did DX me with: Ployneuritis of unknown etiology & sent me for an EMG/NCV with a Neurologist. I'm on Neurontin & Ativan
I know the frustration you have with finding a doctor to tell you exactly what is wrong with you.....it took 5 years for my diagnosis of CIDP so you are ahead of the game there. The IVIG has been the best therapy for me; I have been getting it every 4 weeks for the last 4 years. My first diagnosis was IGG deficiency so they started me on the IVIG before they were sure it was CIDP. I feel great for the first 3 weeks after the treatment, then the 4th week I get more fatigue and find myself getting infections, ear, sinus, chest…..I also get a disc rash on my wrists. I know that in my research CIDP looks different for everyone and that the insurance companies will only pay for the IVIG with certain diagnosis and CIDP covers a lot of symptoms you are having. My very best advice is to get a 3 ring binder and get copies of all your test, blood, cat scans, urine what every they do get the report for it and put it into sections. I also had my family doctor copy for me the office notes from every specialist appointment that they received. I take that binder to EVERY doctor and this allows them to see all the results of what has been done…many times they wanted to order a test for me and then for me to come back, with having the binder they had the results right there. This also shows the history of what I looked like back in 2008 up to now on everything including my IGG levels. The other thing is to keep a diary of how you feel….write down every complaint you have and notes as to what your activity was that day. I know if I do to much one day the next day I’m on the couch. Hang in there and hope the IVIG helps!
Thank you for all the feed back.....I have a folder with labs as far back as the actual lab would fax me. All my emgs,mri's,spinal tap etc. Now Im seeing one specialist at a time ruling out everything I can. Last 2 visits were rehumatologist...Im fine according to her, but waiting for labs to confirm. Saw an eye specialist...that was perfect. Lat I saw a new hemo/oncologist. Knowing people with immune problems can develop other issues down the road, I want to establish a basline with all these specialiast. I am awaiting results of 15+ vials of blood taken yesterday. Also was ordered to have a ct scan of pelvis and abdomen.
I do know that a new problem Im seeing is that my big toe is fallen lower to the others and it is a challenge to raise it. I also can not curl my toes when the rheumatologist asked me to yesterday. She said she was going to bring this to neuro's attention. Walking with this boot, I have fallen 3 times!!!
I am looking into seeing a neuro at Penn as they are "a center of excellence" in CIDP. Getting an appt before summer is the issue~! I would consider the mayo clinic as Im trying to prevent any more damage before it starts. Im only 39 years young with a 6 yr old counting on me...and of course my illness is silent, so it is hard for a child to understand let alone adults.
One of the first things I realized is that I can become unstable, losing my coordination, etc without warning. Having a support bar in your shower or tub is a necessity. I also have to be careful of the water temp I often can't tell how hot it is until too late.I now get IVIG every other week(two days in a row) Flare ups happen after I do too much in one day, and as another has stated the pay back is usually painful. My nurses are always stressing the importance of drinking a ton of water for an easier absorption of the infusion.(it also helps to prevent bad headaches) Proper flushing of the IV will also help prevent clotting.I am a breast cancer survivor and it feels like I am in a truce with it. CIDP feels like a daily battle there can be a temporary cease fire but the battle is always there. Try to concentrate on what you can do and not get caught up in what you can't. Good luck with your journey we are here with you.
Wow it is amazing to hear other people complain about the same things. I now know I am not alone. So far the worst I have suffered from the falls is scratches and bruises. My doctor won't let me go back to work, haven't worked since Feb. I have to lay down and sleep in the middle of the day because I become confused and disoriented, and so unstable and I now have a contstant tremor of the hands and head, to add too the numbness; pain; weakness; headaches; and the VA has finally ordered my wheelchair.
So according to what everyone is describing, Im in a flare 24/7! This is just crazy. I want my life back. Im tired of limits put on my daily activity. I would assume IVIG should have at least shown some signs of working by second round. Instead my toes are now dropping and im not able to curl them. I feel lime im wearing cement shoes. Ugggh. Im definitely looking for a new Neuro!
I had several clots in my left leg and multiple in both lungs.
bteeter said:
Have you had any clotting issues? My first round of IVIG left me with dvt in shoulder and multiple pulmonary emboli. Doc, hasn't tried it again.
mdolich said:
I agree with Mashrub. When I have a relapse (or flare up) I start to feel the tingeling and numbness in my feet & hands, and it starts to climb up my legs and arms. I also get very fatigued. I get IVIG every three weeks because of past relapses, and I have been for the last six years now. I was on Privigen when I was going to the University Medical Center, but now that I go to the VA hospital they give me Gamunex-C. I was first on Gammagard but it didn't work very good for me, then they put me on Privigen and I had a good response to it. Now I'm on Gamunex-c and it also works good for me.
I live near Pittsburgh and my nuero diagnosed me after 4 years, but since I started treatment, he is not really familar with the disease. Sooooo.......I researched and researched and finally found a CIDP nuero in Shadyside. I called 2 months ago for an appt and my appt is Dec. 6. I am frustrated too. And my youngest was about 6 when I started getting sick, (I was about 38) and now she is 16. I also have 4 grandkids and I am their only Grandmother. Don't give up, and you aren't the only one with broken bones. I lost my balance last week and kicked the dining room chair. Nice and black and blue and broken toes.
Also, it is below 80 degrees here. I am starting back with the Reynauds (sic) again. Hate when my hands and feet turn white, then black. (Also a symptom of CIDP). If you are bad the fourth week before your IVIG, tell the doctor you want it every 3 weeks. Remember, it is YOUR body and only YOU know how you feel. I tell my dr. right now if I need to increase/decrease the amount between treatments. I am on a sub-q now at home once a week. I have had dosage increased intermentally since starting the sub-q. When I was on the IVIG I started on once a week for a long time. When I went on the sub-q, I was on IVIG every 18 days......couldn't go the 21 days.
Keep the faith and the binder idea is great! I am going to see what I can gather to put together for the new dr in dec.
Good Luck and feel free to message me !!!!
GonnaGetBetter said:
Thank you for all the feed back.....I have a folder with labs as far back as the actual lab would fax me. All my emgs,mri's,spinal tap etc. Now Im seeing one specialist at a time ruling out everything I can. Last 2 visits were rehumatologist...Im fine according to her, but waiting for labs to confirm. Saw an eye specialist...that was perfect. Lat I saw a new hemo/oncologist. Knowing people with immune problems can develop other issues down the road, I want to establish a basline with all these specialiast. I am awaiting results of 15+ vials of blood taken yesterday. Also was ordered to have a ct scan of pelvis and abdomen.
I do know that a new problem Im seeing is that my big toe is fallen lower to the others and it is a challenge to raise it. I also can not curl my toes when the rheumatologist asked me to yesterday. She said she was going to bring this to neuro's attention. Walking with this boot, I have fallen 3 times!!!
I am looking into seeing a neuro at Penn as they are "a center of excellence" in CIDP. Getting an appt before summer is the issue~! I would consider the mayo clinic as Im trying to prevent any more damage before it starts. Im only 39 years young with a 6 yr old counting on me...and of course my illness is silent, so it is hard for a child to understand let alone adults.
Im concerned that too much IVIG is not good. I know my total protein goes up, and my AST , ASL levels have also risen. I know we have to rob Peter to pay Paul for some things, just not sure what the long term effect will be.
ANYONE WITH LONG TERM IVIG HAVE FEEDBACK ON LABS OR NEGATIVE EFFECTS??