I'm based in the UK. I just wondered what kind of attitude people had from their GPs concerning their CIDP. In my neck of the woods you rarely see the same GP twice and comments have varied from "you can't possible have tnose symptoms" to seeming disinterest, and the attitude that the condition didn't really exist. I've also seen a GP who was extremely supportive be admitted they didn't know anything about the condition. The reason I ask is that feeling supported and, well, cared for is very important. Just wanted to know what others had found.
My GP was very honest. He knew that what I had was beyond his expertise. He even came to the hospital to see me while he was doing his rounds. (It was a personal visit, not a medical visit.)
I spent most of my life in the US, every GP I have over 3 decades did not know what to make of my numbness in the feet and legs, they tested for diabetes found none, then just brushed it off. I admit that I did not push the issue or try to chase up further tests. It was finally after being in constant pain, unable to sleep, on codeine etc that the pain really began in my hands fingers, arms, and legs about a year ago.
My family and friends pushed me to see a pain and fibromyalgia specialist on private pay outside of the national health care here in Israel. He spent 2 1/2 hours on my exam and diagnosed CIDP during that office visit. He dropped the codeine and put me on Lyrica and ordered followup tests. Lyrica changed my life, the pain is 80 to 90% reduced and I can sleep all night!
I've been in a long series of testing with a neurologist EMG / NCT endless blood work, spinal tap, nerve biopsy etc. The possible causes of the disease are slowly being eliminated in his quest to find the underlying cause and treat it as well as the CIDP.
A GP in a group scheme was the one to see me and he referred me for blood tests, bone scan, CAT scan, more blood tests - but to no avail. Finally I expressed 'frustration' with a lack of results and suggested 'we' needed to be more proactive in determining the issue. He phone a Rheumatologist at the hospital who said he wanted to see me immediately. He hospitalised me and five days later - after batteries of tests (including a lumbar puncture) he diagnosed CIDP (completely skipped the GBS diagnosis although I'd only had the symptoms for a few weeks). A few weeks later I commenced IVIG for five days straight and have been on four weekly infusions since then. The 'affliction' of ours is outside the experience of most GPs. However, I now have a GP who understands and assists me with my medical needs. The support I receive from the GP and Rheumatologist is brilliant!
roosevelt Hello,two weeks ago and as I was leaving the consultation I was handed the nerve conduction studies print out by a Gp . I had been asking for it to be sent to the hand surgeon in another area of the Uk where I am going to have my surgery out patient check-joint replacement. The surgeon thought I might have carpal tunnel syndrome in the other hand which is scheduled for surgery, hence the test.
I don't think he'd read it but he added "and I'm leaving on 6th June" Deserting the sinking ship. I took this home and fed the "long axonal nerve fibre, sensory and motor, peripheral neuropathy into google , and what a shock. He has asked me during the consultation if I wanted Citalopram ( anti-depressant). They always ask about my mental state before any other physical issue seems allowable. The day before this I'd phoned the Gp's saying I must talk to someone or see someone today. I told my son that I would have to contact social services now becuase I'd hit a brick wall and couldn't look after myself any longer. That's, not only because of my dominant hand being incapacitated following surgery. For years every time I say "fatigue or "I can walk somewhere and then I get stuck"or I can't grip. get cramp in my diaphram, prickles all over my body, etc etc. etc I'm ignored or not seen. I call that not being seen F.O.G (s) Female Old Grey and (short). five years ago I asked my GP if he thought I might have Myasthenia Gravis. Blood tests done showing a high Creatinine Kinase- a result of muscle tissue breakdown ( natural process). He says don't see a neurologist you need a Rheumatologist. 3 rheumatologists later and a fluctuating but still high CK . Backwards and forwards no expalnation or anything other than keep checking the CK and re-refer.I phone the surgery and ask the GP to phone back He doesn't but because he persistently asked me what I wanted and I said Doctor, you're the doctor,doctor, I left a message saying that now I did know what I wanted and that was an urgent Neurology referral. I've been back twice more since then for pain relief etc and although I presumed it was done, he said it would take a long time and he'd upgrade it to urgent. meanwhile I'm getting scared with more pins and needles shooting , swelling hands which is to be osteo arthritis Or inflammatory arthritis. You (don't cos thank god still NHS even if it is flat on it's back) pays your money and takes your choice. Yesterdays GP whilst saying he would make the referral , said , 'these tests (EMG/nerve conduction) open to interpretation and are only as good as the person reporting on them'. I agree . The person reporting was a Consultant clinical Neurophysiologist, the same consultant who did the test. That was the point at which he said he'd upgrade the referral. I think my comment prompted him to actually read the test. he asked to see me in 6weeks. I asked if he would give me an appointment. "Wer'e changing the appointment system, I can't but make an appointment on the way out. Receptionist says I can only book 4 weeks ahead and we don't have aany appoinments , you'll have to keep telephonong. My last comment there was. Why am I asked to do something which is impossible to fulfil. So dear folks so far Google and me have made the diagnosis, I'll have to wait and see. There's an old addage which goes "you can't treat a dead patient" This maybe the sort of rationing that underpayed hard pressed striking NHS doctors who have always had their mouths stuffed with gold ( Aneurin Bevan quote I think) are practising for the FOG s never had it so good generation. I will keep being seen and even perhaps develop the habit of making a nuisance of myself.