I too, have been on this CIDP roller coaster ride for about 10 years now. I get the ringing in my left ear and am losing my hearing in that ear. I don't have the tongue numbness, but I do choke on the stupidest things (like my saliva). I take Hizentra at home once a week, and have become more stable since coming off the IVIGs and starting this therapy. It seems to be a more constant dosing. I also have trouble driving at times, but do not need the hand controls yet. I was told again and again, "There is something wrong with you, but I haven't the faintest idea".
I developed this after a flu shot, so my kids and grandkids won't get the vaccines as long as I have my say. The general doctors don't know what this disease is, ER doctors never heard of it or think you are lying about it.
I felt like a hypochondriac for years. Even to the point my family (even husband) at first thought I was faking the exhaustion and pain. Once the shaking and cramping muscles started after about 3 years, they finally realized that something was wrong.
Keep your head up! Keep researching and asking questions! They obviously have not been trained in this disease. It is our symptoms and our bodies, only we know how we feel, so keep fighting!
hi,i to have facial weakness an 1 side of my face seems a diffrent shape then the other side my doc thinks i am mad when i ask him about it,i to have bad earing an ringing in my ears an dizzy allthe time was told they are not related to c.i.d.p.but i read perinial nerves can alter face an do thing to ears,im trying to see my specialist again in birmingham as im due 4 a electric test to see if theres any change in my nerves an reflex,s,it took my doctor 7weeks to realise i had something wrong with me when i 1st went down with it,it was only when i collaspsed on the floor he did something then the hospital said it was all in my head an was about to send me home paralised when dr francis from birmingham was in the ward an asked what was wrong an did some tests on me them sent me to selly oak hospital[were the army used for the war] they said it was guillian barre at first but as it took weeks not days to come on they changed it,i was in hospital for15weeks an paralised up to the neck i could just use my arms an hands to eat picking food up with my hands as i could,nt hold a spoon or fork i was relised when i could do 4 steps with a walker it was christmas an i wanted to be home i got home jan 4th an been getting on with life the best i can,with what life as throw at me.never give up is what i say an look on the bright side dont let it get you down as its a long way back.best of look to any one who is going through the i dont know whats going on stage,you will get there.love an light to you all.god bless.xxx jan.xx
Hi all, from what little I have read so far we all seem to be suffering in various degrees from the same symptoms, so I dont think they are random. GBS/CIDP is a rare "disease" and most general practitioners know less than we do, even some of the best specialists seem to have a limited understanding of what exactly is going on and how best to deal with it!
Hypochondriac???
How can anyone with GBS/CIDP be called a hypochondriac, anyone who has had/does have it knows how bad it is. Would be nice if it was all just in my head.
Off to see my Shrink .............Not really, my foot spa is my best bud atm
I don’t work with the public and am on Immunosupressants. My neuro says abolutely not. no flu no shingles and if I want pneumonia vaccine to check with pmp first.Mike
Hi clb75. You sound like me. My neurologist(s) have been extremely honest about how little they know about my condition, where it will lead, etc. Treatments have been somewhat like throwing mud at the wall and seeing what sticks. Their honesty has been a plus. As my symptoms wax and wane, I have numerous symptoms that come and go or move around. Since everyone's experience is somewhat different, this is what I suggest. If you are uncomfortable with your neurologist, get a new one. This is a life long illness and it's our responsibility to have the best medical team possible. I'm not saying "shoot the messenger" but you want to have faith in your neurologist and feel that your situation is really important to him / her.
Well said JB. Attitude and confidence goes a long way in dealing with this condition.Find a neurologist you relate to and that alone will move you along ways.