Has anyone got POEMS or CIDP??
Posted , 3 users are following.
Has anyone got any experience with POEMS or C.I.D.P?
Yes I have been looking at doctor Google, smacked wrists, but what else can we do 
I will try to be brief, but I really need some direction as my doctor hasn't got a clue.
After 10 years of awful itching in my shoulders I was finally treated with steroid injections in my facet joints in my neck...bingo 95% better.
Throughout those 10 hellish years I found the only relief was ice and I put packs of it on my arms constantly. Consequently I then developed a thing called Cold Urticaria, where below 16-17 degrees I come up in painful burning hives and extreme tiredness (basically I am allergic to the cold). When diagnosed with this condition they found M proteins in my blood IgG 3gl (as its also connected to Myeloma) and I was diagnosed with MGUS (I believe using ice caused this reaction to change my blood).
At around the same time I started to get weakness and chronic shooting pain in both my legs, the pain is very intense has got progressively worse and is 70% of the time. This is the worst symptom I have. In the past 6 weeks my hands and arms have started hurting too. I have intermittent vision problems and kidney pain (or referred pain as its around that area). I have been put on morphine patches and sent away, but I don't want to be on opiates.
I have positive ANA and P-ANCA (positive for auto immune but which one?) low in folic acid and serum bicarbonate are among a few flagged tests also high ESR and kidney function is 71.
I have been sent to kidney specialist, nothing wrong just a small amount of protein. Rheumatologist said I was fine as I could touch my toes! Haematologist said when I get 10gl of IgG then he will investigate Myeloma.....it just goes on and on.
MRI on my back all ok (apart from facet joints, but all ready diagnosed)
Now my doctor wants to look for MS and has ordered a brain scan. I had one 3 years ago (migraines through stress) if there was anything like MS it would have shown up then.
Can anyone tell me who to see who to be asked to be referred to or any idea whats wrong with me?
thanks in advance
0 likes, 3 replies
stevesurfer vix66
Posted
vix66 stevesurfer
Posted
I dont know what the ratio albumin/protein ratio is but my serum albumin was 36 g/L so quite low but not under range of 35-50g/L and my serum bicarbonate 21 mmol/L normal range 22 - 29mmol/L so that was under. These were just blood tests though not a spinal tap.
Thank you for your help I will ask for these tests.
beverly44249 vix66
Posted
I have been diagnosed with CIDP. I have Privigen infusions every 3 wks. Insist on the infusions without delay. My first neurologist denied me IVIG and it took almost a year to get to the neurologist that ordered it. so I lost almost a year without treatmenrt and my body and nerves suffered because of it. Now I'm struggling with numbness and balance and can't drive, I'm taking infusions, seeing an accupuncture dr and taking physical therapy trying to regain my strength and balance.