Does anyone ever feel like a hypochondriac when talking to the doctor? Since being diagnosed, I have a degree of random symptoms that happen almost every month and the doctor always tells me it's not related. Some may not be but some I know are. Whenever I bring something up, I'm told it's not related and go see my primary care doc. Well of course they have never even heard of CIDP and don't know what to do. I'm left with the symptom to deal with and no one can tell me what to do about it. I'm tired of feeling blown off, I guess it's the state of medical care these days.
I am now having facial tingling and some burning on both sides from the cheeks to the jaw line. I have ringing in my ears too. Does anybody else have this? I know the facial nerves are not peripheral nerves so I'm confused.
I'm also having trouble driving given the issues with my feet. I'm thinking about hand controls but not sure if they would aggravate the weakness and numbness in my hands and arms. Just curious if anyone had these and what their experiences were?
Thanks for the reply, I'm glad to know others have similar symptoms and I'm not alone. I'm confused about the facial nerves because I thought they were controlled by the central nervous system and not the peripheral nerves. Since CIDP typically attacks the peripheral nerves I wasn't sure what was going on. Did your doctor ever say why the eye droops during a relapse? I think that's what I'm having. I put a call into my doctor's office and am still waiting to hear back. mdolich said:
Yes clb75, I feel the same way. lol Somtimes I think the doctor is wondering if I should be in the loony farm!!! But no seriously, I have a great group of neuros at the VA hospital here in Salt Lake. They listen to everything I say and try to investigate my symptoms. I also have a droopy right eyelid. It started when I had a bad relapse in 2008 and I still have it. My neuro at the time said it was not uncommon for it to happen to CIDP patients who have relapses. When I had the bad relapse in 08 the ER thought I was stroking because all my symptoms resembled a stroke. Except mine were on the right side of my body, not the left.
I also have facial numbness, my lips and tongue are partially numb, the top of my head is numb and my shoulder blades are tingly. Remember peripheral neuropathy is a disease or degenerative state of the peripheral nerves in which motor, sensory, or vasomotor nerve fibers may be affected and which is marked by muscle weakness and atrophy, pain, and numbness. Thats what CIDP is all about. We have sensory nerves which are part of the peripheral nervous system, throughout our body including the face.
As far as driving goes yes I have trouble with my feet too. I've thought about hand controls but haven't checked into it.
Your symptoms are consistent with CIDP. Don’t feel like you’re a hypochondriac. I spent 25 years with bizarre symptoms, and even had psych diagnoses before the correct diagnosis was made.
Don’t dwellon your symptoms, but dont discount them as imaginary either. They are very real. You are in good company here with us other “1 in 100,000” who know some of what you are going through.
I would agree that it would be good to check for Bells Palsy, but strange and multiple symptoms come and go with many of us. Doctors can be a real challenge the more they say "these are not related, just go see your primary." Often, THEY ARE RELATED! :) Medical professionals are just slow in knowing up to date info. You are not alone!
I too have a tinnitus ring in my right ear and have had it for ten years. At that time my only other symptoms were cold hands in a mild temprature drop. Otherwise i felt fine and put the tinnitus down to industrial deafness. However 3 yrs ago I developed further CIDP symptoms and was diagnosed fairly quickly. Only now I relate the deafness as an early symptom of CIDP (and the cold hands as well).
Hi, I don’t have a diagnosis yet and have been having symptoms since mid May. In the beginning I had some numbness in my face ears and tounge. And as of late I’ve had tinnitus in my ears daily. it’s not enought to drive me crazy but the nearly constant ringing in the background is very noticeable. This may not help you much but I just wanted to share. I can understand how frustrating it is. I was told Flat on day one I don’t have CIDP when I went to the neurologist but I just don’t know what it is and I still think it could be any of many disorders. Mine started after vaccination so who knows . Hope you don’t mind my asking but do you have tingling and numbness and pain in your extremities that comes and goes from minute to hour to day? Also wondering what your weakness feels like. I seem to get a lactic acid burn sometimes it seems to come on faster than others but the amount of activity that causes the burn is nowhere near what I used to be able to do just a few months ago and never have a burn.
I also developed a shake in my torso muscles that control my arms and my legs. One Dr. I went to told me it was my joints that I was getting old and my joints were just all out of whack clearly when she moved my Arm and couldn’t feel any vibration without me controlling it and then when I control it with my muscles here, she should have realized that that would be muscular not joint. The next doctor agreed with me that was muscular and she didn’t know what to do about it so she’s sending me to see another specialist. I’m not that old I’m only 42!
The doctors can be very frustrating because a lot of them don’t have the experience needed to diagnose these complex disorders I can see that after seeing six or seven doctors already in the last few months.
I havent said much here latley but I can relate and wanted to tell you your frustrations are understood. You should perhaps look for anoter specialist who has more experience they might understand and believe you.
Did your Neuro tell you facial numbness isn't related? That's not true. I'm going to post a video on CIDP that may answer some of your questions. Facial numbness is covered in this educational video. Don't get discouraged. I have the same problems as I think we all do. Please watch this !
Yes, I know what you mean about feeling like a hypochondriac. My neuro has tried 2 different IVig brands and I had reactions to one of them, and then they gave me too much solumedrol to prevent further side effects and the solumedrol caused me to be hyper-glycemic. So he's taken me off IVig altogether and I am taking oral prednisone and Imuran. I had side effects from Cellcept (horrible diarrhea). So now I am hyper-glycemic (I nearly passed out at work and ended up in the ER) and am starting to feel the numbness and tingling return. My neuro tells me to see my PCP for the glucose problem, but like you said, the PCP knows nothing about CIDP. It's very very frustrating. I just want to feel normal again.
Also, my neuro says since I work in a hospital (I'm a medical social worker) that I should get the flu shot and that only a few small cases of GBS were caused by a bad batch of flu vaccines years ago and that I should get the shot. I'm scared because i don't want my symptoms to get worse.
Has anyone tried homeopathic remedies or seeing a holistic doctor?
JC, you're case is VERY similar to what my son went through. Our Neurologist would just roll his eyes and say "it's not CIDP" it felt like we were being dismissed. The answer for us was an active infection of bartonella (the facial tingling is a symptom of bartonella). My son actually developed bells palsy as well. We have documented our story, along with information and more at our website www.beatingbartonella.com. That is why we have returned to these website to tell our story and spread the word. Read the info, see if you see yourself in there and by all means get tested! Galaxy labs is the only lab that can accurately make this diagnosis. Good luck and let me know if I can help in any way.
I copied and posted this so you could understand the peripheral nervous system a little better. The centeral nervous system consists of the brain and spine. Once the nerves leave the spine their considered the peripheral nervous system. In the picture at top it say's that the Blue is for PNS (perpheral nervous system), and the RED is CNS (central nervous system).
I copied and posted this so you could understand the peripheral nervous system a little better. The centeral nervous system consists of the brain and spine. Once the nerves leave the spine their considered the peripheral nervous system. In the picture at top it say's that the Blue is for PNS (perpheral nervous system), and the RED is CNS (central nervous system).
Thank you all for your responses. It helps to know I'm not the only one going through this and to hear about the experiences of others. I'm still waiting to hear back from my neuro about these latest symptoms so I'll keep you posted.
I would think twice about the flu vaccine. I got CIDP from the H1N1 vaccine in November 2010. It has ruined my life. The H1N1 vaccine causes more GBS and CIDP than the general public is told about. I did some digging and that is what I found out. Also in 1976 the first time they gave the Swine Flu vaccine they had a big problem with GBS and CIDP but did not warn the general public. Just told neurologist to be on the look out for the symptoms of the disease. They were fully aware the vaccine was causing a neurological condition but did not want to stop vaccinating so kept it hushed. Same as in 2009 and 2010. I will NEVER get another flu vaccine nor will my 8 year old daughter. I would rather take my chances with the flu!
Thanks for the video link, it was very helpful. I have an appt. with my neuro Monday so I am waiting to see what happens. Do you mind telling me about your facial symptoms? Do they come and go or is it numb all the time? Can you eat and drink ok? Thanks...
Thumper said:
Did your Neuro tell you facial numbness isn't related? That's not true. I'm going to post a video on CIDP that may answer some of your questions. Facial numbness is covered in this educational video. Don't get discouraged. I have the same problems as I think we all do. Please watch this !
My facial numbness comes and goes and so far it doesn't interfere with eating or drinking. I only notice it once in a while, it will start to tingle and then stop. Hope you get some answers ! I went to see my Neuro yesterday and he's doing more testing .....I wish I knew what was going on. Seems I may not have CIDP after all???? The roller coaster ride is back on.
Wow, I can't believe they are changing their minds, I hope you get a better sense of what it going on if not CIDP. Thanks for sharing about your face...I was so afraid it was going to go as numb as my feet which would be a problem. Like when you leave the dentist and can't chew or drink until the novacaine wears off! Good luck to you.
Thank you ! Since I can't have IVIG (for me it's life threatening) and I'm not responding to steroids he has to look for another cause or like he said "there are so many variants to CIDP he is looking for the right one" So, basically treatment has been halted and I'm waiting for results to come back..... waiting again. Oh well, it's only been five years .... what's a few more weeks. ha ha
clb75 said:
Wow, I can't believe they are changing their minds, I hope you get a better sense of what it going on if not CIDP. Thanks for sharing about your face...I was so afraid it was going to go as numb as my feet which would be a problem. Like when you leave the dentist and can't chew or drink until the novacaine wears off! Good luck to you.
