I,m interested to know

Does anybody know or been told of the complications that can arise with other conditions and Vasculitus. As some of you know (me being a regular poster of this forum) I suffer from Wergener's and unfortunately I haven't been having a good time of it lately, having to go back on rituximab after two years of being of it. I went to my doctors, roughly six months ago to told him I was having problems with both my hands whereby, I had lost sensation in them and they were constantly burning then going numb and how I was constantly dropping things. My doctor (being one of the best doctors there is sent me for nerve conduction tests and some other tests and I was told I had Carpal tunnel syndrome in both wrists (which was very unusual) but a date for decompression surgery was set and I was looking forward to getting some feeling back in my hands, That was until yesterday when my rheumatologist told me not to get my hopes up as the operation may not work because I was suffering from, what is a complication of vasculitus another condition called mononueritus multiplex and that it had been written in my notes for sometime but nobody at the hospital had seen fit to tell me. I think doctors who deal with conditions like vasculitus and such should inform people that these complications could arise so they could be prepared. I had the same last year when I found out I was the proud owner of catteracts on both eye's but, couldn't have surgery to remove them, because my rheumatologist was not willing to stop my prednisolone for any lengthy amount of time. One of the only complications I was told about with vasculitus from the beginning was I would have to take calcium for my bones anything else I learnt was through research of my own after I was found to be suffering these complications. maybe doctors should hold group discussions with patients who have rare conditions say once a month to keep them informed of what's happening in the scientific community and anything related that their patients may want to discuss.

13 Replies

  • Dave - I'm glad you have said all this. I too fell victim to an unexpected consequence - a dvt - and nobody warned me of the increased possibility of a blood clot that comes with AAV. My job today was writing my contribution to the revised international guidelines for treating ANCA associated vasculitis and I have written a lot about patients needing to know about possible consequences of AAV - both directly due to the disease and indirectly due to the treatment.

    I do take the view that patients should not be passive, depending on the doctors for everything, but have a responsibility to inform themselves as much as possible about their disease. Of course the other side of that coin is that the information has to be available & readily accessible. When I look at the info that we, Vasculitis UK have available, I think it probably falls short and needs to be reviewed.

    If you come to the Vasculitis Patient Symposium in April, Dr Nina Brown will be talking about the "holistic" approach to vasculitis patient care. I'm also encouraging a neurologist to come and talk about the neurological consequences of vasculitis, either at the symposium in April or the Vasculitis UK AGM in May.

  • I agree with your suggestion on meetings. It would be nice to get all the Drs who are invoved in the care and be able to sit down & discuss. Also a list of all the problems they have diagnosed would be useful as like you I have discovered things accidently. I also forget medical names so a list would be useful then I can look them up when I get home.

  • hi dave sorry to hear that u am not having a few problems I have rede your comments and yes I think we should have group sessions

  • Hi. I have vasculitis from my rheumatoid arthritis and lupus. My vasculitis causes small strokes known as TIA 's. I have had 4 with no residual effect. Shows up on UR brain scans that's how they know plus I get disoriented, memory loss , can't walk straight, basically unaware of my surroundings for 12-24 hrs. I'm only 50 and was dx'd with RA finally at age 45 tho it was suspected I had it since I was pre eclamptic with my first child. But those # gotta match up! So my Neuro , cardiologist have me on a blood thinner and a baby Asa a day to hopefully not have any more clots. That's my extent personally with vasculitis ( inflammation of the vessels). Best of luck

  • Hi Dave ,I have Vasculitis and I too have Carpel Tunnel in both wrist,after reading all the info about it I decided to try the Carpal Tunnel wrist supports, because as you say the op is not always successful , and I felt why put myself through more " may work ". and I have to say,after wearing the support full time for a week ,the pain is deffinitely a lot better, of course you may have already tried them ,and we are all different ,and it may not be "a cure ",but for me at least it has brought relief.

  • Thanks for all replies, but Jack I have tried the supports, I bought the black dual supports which support not only the carpal area but the front side of the wrists and unfortunately they don't make a great deal of difference to the numbness, the dropping of things or dystonia, which is why I was pinning my hopes on this operation being successful if only moderately. As it happens John my wife is a qualified holistic therapist so we have even tried going down that approach as well so either way it still have to count on the op for some relief so here's wishing me luck.

  • I would be interested to know how the op goes, if you do go ahead with it,these things become very annoying on a day to day basis, I seem to have most trouble with the base of my thumb ( the soft palm side ), I think maybe some of it can be Arthritis related,my son had similar trouble and tried injections which were very painful and made no difference whatsoever and in the end had surgery and has had no further trouble, So I think it,s make your/our choice and hope it at least offers some relief. I wish you well ,Incedently it was suggested that if you shake your wrist it can offer some relief, Iv,e tried it and for a short time it does,and as the saying goes " every little helps ".

  • Hi Jack, I have decided to go ahead with the surgery and in fact I am having it done tomorrow 17/03/15, I have been booked in at a ridiculous time 7.30 am and the hospital is an hours drive away so I have to be up dressed and out by 6.30 am but when I wake up in the morning I need an hour to wake up and get used to the daily pain I suffer which means a 5.30 wake up and it's hard enough for me to fall asleep at night as it is. I know what you mean about the thumb thing but mine are in all my digits and the lock in very painful positions and won't unlock till I pull them apart with the other hand that's not locked. I also did the shaking of the hand bit and it worked for a while but doesn't any longer. I also agree with you a lot is arthritis I suffer chronic rheumatoid arthritis which I do think is the main culprit for starting the spasms off, but the pain I can cope with is the loss of sensation in my hands where I can't feel things and am always dropping things, plus I work with wood making bird houses, coffee tables, gates, and the like like, so when my hands don't work properly neither can I. So I am really pinning my hopes on this op tomorrow, because if it's a success on one hand they will do the other six weeks later, if not a success then they do an operation on my elbows as the nerve conduction test showed and I quote " considerable nerve damage to both elbows". So wish me luck for tomorrow and I will definitely keep you posted.

    Dave "Buzzey Bee" Bryan

  • Well Dave I do wish you well for tomorrow and I know only to well about the 7.30 am arrival, I have had 2 hip replacements in the last 4 years and they were both 7.30 starts, and I usually wake up feeling as if I,ve not been to bed and usually feel nauseous ,so I can well understand what a big thing it is .( only hope your not on the list for 2pm!!/ all that hanging about ).I will be interested to know how it goes for you ,and really do hope it does the job,As I wrote last time, my son had the op done and only yesterday was telling me that he has had no trouble whatsoever since,and he knew nothing about it , so I would hope it will be the same for you, I can,t say I,m a lot better ( my thumbs )sometimes they are worse than others ,but as you have with your fingers ,I have with my thumbs, locking. I have a Rhuemy appt next month so I will probably mention it then,but I don,t expect to get much of a reply beyond saying it,s Arthritis. I, m at Addenbrookes on Friday but probably won,t mention it there either as I don,t feel it has a lot to do with Vasculitis ------ just another thing to add onto the rest. Good luck ,

  • Hi Dave,

    I too have Carpel Tunnel Syndrome in both wrists (It was never mentioned at my nerve conduction tests that that was unusual though?).

    I have moderate to severe CTS in my left hand and moderate to mild in my right hand. Similar to jackrussell, it is the soft area at the base of my thumbs that are the most painful in my case, which means sometimes I can't open a jar or bottle etc. Very frustrating!

    I'm toying with the idea of having the op' but concerned about how it might turn out, or if it might even make things worse. 😟

  • Prior to being diagnosed with MPA (affecting both my lungs and kidneys) I had horrendous carpel tunnel which kept me awake at night. I didn't use my hands much so was a little surprised it was so severe, especially in the left and Im right handed. I was taking huge amounts of prescribed pain killers just to get through the day which are not good!!!! My hands, both of which were unusable, I couldn't change gear in the car, hold a shopping bag, I developed dupytron in two fingers too. Had both hands operated on at the same time, hideously painful BUT 100% successful from the minute I was back in recovery. I'm not a typical candidate for carpel tunnel and to be diagnosed with MPA less than a year later was odd but the op sorted it out that's for sure

  • well for the moment I have had this decision about this op taken out of my hands as I am at present suffering a pretty nasty virus, so until I get better from that I cant have op I will however keep everyone informed of the new date for op and how well or not it works.

  • Will there be any concession / discounts for the Symposium at all?

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