Wegeners Granulomatosis

[carmpurple]

My husband has lost the sensation in the thumb and 3 fingers of left hand and lower arm which is causing him great discomfort . he is taking 7x 5mg Prednisolone daily which will be reduced by 1 every 7 days . Does anyone know if acupuncture would help ? He is still awaiting physio for this and for problems with legs. 7 phone calls made yesterday to hospital to chase this !

[John_Mills Volunteer]

would you like to phone John or email him carmpurple .... please [e-mail] or 01629650549...

Susan

[JacquiM Volunteer]

Hi carmpurple

I have WG and am experiencing exactly the same lack of feeling in my left hand and left arm from the elbow down. I drop things easily from my left hand and I'm not aware that I have as there seems to be no feeling in that hand sometimes. I am due to have a nerve conduction test end of this month.

Also, I have had the feeling of pins & needles in my lower left arm shortly after I was diagnosed. Sometime it causes a lot of discomfort. I also suffer with pain in the joints in both hands and left elbow on occasions but most of the pain is in my feet.

Really hope they can help your husband very soon. Take care

Regards

Jacqui x

[carmpurple in reply to JacquiM]

Thanks Jacqui,

My husband had a nerve conduction test in hospital, this showed he has some nerve damage but as yet we are awaiting to find out what the next step in treatment will be.

[Nadine99]

My husband has had the same problem with hand/arm and had the nerve tests done. He had lost feeling in his little finger & next to it. It was his Ulnar nerve trapped in his elbow (as opposed to Carpal in the wrist) and he had an operation on his elbow to move the nerve on the other side of his elbow joint. Get it checked as soon as possible because he has lost the muscle in his hand and now has difficulty holding things although his beer is now in his other hand!! Just a thought, check out the internet sites for more info.

Good luck, Nadine

[SandieB]

Hi i have WG and i have nerve damage in both my feet which is most fruatrating, i also have had the nerve test done,i was given meds for it but i was like a walking Zombie didnt no what i was doing so i had to stop taking them. Good luck and hope you get sorted soon.

Sandra

[carmpurple]

Cheers Nadine ,

you cant keep a man from his pint !

we have an appointment with the rheumathology consultant on Monday, Iam going to raise this again with him . I have also raised the issue of limitrd mobility due to the pains my husband has in his legs, he has not been seen by physio or O.T which I requested 3 weeks ago as none of the proffesionals had suggested a referral. I made several phone calls yesterday to chase this and we are still trying to find out if the referral has been made.

I am trying to find out if there is any evidence or research regarding acupunctre and any benifits it masy have in easing the pain .

Regards

Carmel

[quinnster]

hello carmel

i had similar problems,when i was first diagnosed,i also have wegeners,and had problems with hands cramping over and numbness in hands

also had nerve conduction studies,done at the royal liverpool,and they were inconclusive,and also spoke to consultant work it out,anyway to cut a long story short,once the steroid dose was reduced ,it all returned to normal

hope this helps

[carmpurple]

Thanks Got another 6 weeks of steroids to go.

[amita_valmiki]

I am from India, and people here absolutely are unaware about WG. I am suffering from 7 years, and I am a lecturer. In these 7 years I had 8 relapses, 6 times taken Ristova (with four infusion at a time) and Immunoglobolin with 14 viles one infusion I have taken 6 times. Thank God, in India, there is too much of warmth, at my work place, at home and with friends and family, this keeps me going. But my doctors are amazing. Was on MMF for some time and had terrible side effect. So stopped. In all this Yoga and brisk walk helps one a lot. My lungs have seen many cavities and patches and nodules. But, I push myself and I think it works. I wish all good to you all. Love