User Tag List

Likes Likes:  0
Page 5 of 7 FirstFirst ... 34567 LastLast
Results 41 to 50 of 65

Thread: just diagnosed and got lots of questions!!

  1. #41
    Join Date
    Jul 2010
    Location
    see map location
    Posts
    4,127
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    I had hand tremors shortly after diagnosis from treatment and think it was mainly the high dosage of pred meds but I was also on CTX and lot of other meds too.

  2. #42
    Join Date
    Oct 2011
    Location
    Nashville, TN
    Posts
    557
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Same here. I was started with Pred and CTX, and also had the hand jive stuff. It mostly went away when the Pred came down but not completely.
    "Never go to a doctor whose office plants have died." - Erma Bombeck

  3. #43
    Join Date
    Nov 2011
    Location
    Ohio
    Posts
    1,969
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Dan27 View Post
    Sorry to hear you are suffering with WG. I was diagnosed in November of 2008 by lung biopsy. 5 to 10 years on mtx seems like alot to me. I was on mtx for about 6 months and then switched to cell cept. I was being treated locally until my Dr. called and said he didn't know how to help me any longer. He referred me to The Cleveland Clinic where I am still being treated. The medication that has helped me is rituxan, it is done by I.V. with the dose 2 weeks apart every 8 to 9 months. I am currently in remission because of the rituxan. The meds I take make me feel tired all the time, but other than that I feel good. I was 57 years old when I was diagnosed.
    Dan, what dr. do u see at CC ? I also go there and lately I am thinking about stopping going there and just seeing my local kidney dr. I was very dissappointed with him my last visit.
    Life isn't about how you survive the storm, but how to dance in the rain !

  4. #44
    Join Date
    Jul 2010
    Location
    see map location
    Posts
    4,127
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by HopeinTN View Post
    Same here. I was started with Pred and CTX, and also had the hand jive stuff. It mostly went away when the Pred came down but not completely.
    I remember having trouble even feeding myself for awhile. Did you? I couldn't read my signature either.

  5. #45
    Join Date
    Oct 2011
    Location
    Nashville, TN
    Posts
    557
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Mine wasn't near that bad. I'm sorry you had such a hard time with it. I mostly noticed it when at work and typing or sorting thru papers.
    "Never go to a doctor whose office plants have died." - Erma Bombeck

  6. #46
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,912
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    Mine wasn't that bad, either. Same thing, sorting thru papers and such. But bad enough that one or two people noticed it.
    Anne, dx'ed April 2011

  7. #47
    Join Date
    May 2010
    Location
    Eastleigh, UK
    Posts
    463
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Ok Smithy The secret for getting some sort of life back is getting to an experienced consultant Rheumy AS QUICKLY AS POSSIABLE!. If not done already, I would go to my GP AND write to your current consultant and demand urgent (ask first) refereral to Addindbrooks and Dr Jayne. Your current consultant has had several months to get your condition under control and would have seemed to have failed.

    I am no expert but would have thought it to be expected for you to be seen by your consultant weekly or monthly untill there is an element of control of the WG. Any decent WG consultant offers a method of contacting them or their specialist nurses for advice quick intervention can be a life saver with this condition. Monthly blood tests are standard also as the Mtx can cause problems and for some people (but not all) the test offer evidence of activity of WG. The infusions should help though even if they mean you can't sleep - get a lot of work done though The ENT man also needs to have WG experience and I would expect that Dr Jayne will have their own - use them.

    No one should need to be on high steriods for too long and recuction is important. I found that every time I reduced steriod levels, then the symptoms i had changed too. Sometimes i would get very emotional, others, headachs, sore eyes, hearing loss, BUT in each case these would go away after a maximum of 8 days after the reduction. So, yes, reductions do make you feel bad again for a few days. sadly, if the symptoms continue then increasing the steriods again , waiting a month or so until things settle now before trying again.

    Living life with WG IS a balance - Don't know if you have seen this but it's worth a read. I found it very helpful. The Spoon Theory written by Christine Miserandino | But You Dont Look Sick? support for those with invisible illness or chronic illness

    You can't fight this, I've tried (as have many others and lost). Normal life is unlikly to be resumed any time soon. The best we can hope for is remission and a good standard of life. Do too much in the early days and you will spend the next three days wondering what hit you , so , unless you like feeling grotty, play the game and live a smooth...er life. The spoon theory helps with this.

    regards
    Paul
    Behind every great man is a woman rolling her eyes.
    Jim Carrey



  8. #48
    Join Date
    Nov 2012
    Location
    united kingdom
    Posts
    17
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks paul, good advice, and i love the spoon theory, im going to use that one.

    Learning to take life slower is going to be the hardest thing, but i can see it also having its advantages!!

    I have called addinbrokes today, there is a 6 week wait for an appointment, which is fine, i have an appointment with my gp on monday to get a referral, im a little worried about upsetting my current consultant, as we were paying to see her privately and then she managed to sneak me back into the nhs, but im sure she'll get over any offence caused. and at the end of the day i need a specialist, safety in numbers and all.

    x

  9. #49
    Join Date
    May 2010
    Location
    Eastleigh, UK
    Posts
    463
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by jsmith View Post
    Thanks paul, good advice, and i love the spoon theory, im going to use that one.

    Learning to take life slower is going to be the hardest thing, but i can see it also having its advantages!!

    I have called addinbrokes today, there is a 6 week wait for an appointment, which is fine, i have an appointment with my gp on monday to get a referral, im a little worried about upsetting my current consultant, as we were paying to see her privately and then she managed to sneak me back into the nhs, but im sure she'll get over any offence caused. and at the end of the day i need a specialist, safety in numbers and all.

    x
    All positive Smithy Your consultant will just have to go on holiday for three weeks instead of a month - She'll live!!
    Behind every great man is a woman rolling her eyes.
    Jim Carrey



  10. #50
    Join Date
    Jan 2010
    Location
    Yuma, Arizona 85364
    Posts
    952
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Hammy8241 View Post
    All positive Smithy Your consultant will just have to go on holiday for three weeks instead of a month - She'll live!!
    Great advice Paul. I love the spoon theory, my family and co-workers have all read it and it is very valuable. When I get to work they ask how many spoons I have and if I am having a low spoon day they try to re-arrange things for me so I don't use as many.

    Your advice about finding a balance is excellent. i remember when I was first diagnosed I kept trying to get someone here to give me answers about how to develop a if this happens then wegs will go this direction etc. I remember Jack basically telling me to get over it and that I had to find a new normal. It was really the best advice I had received. I guess that I would be kidding myself and you guys if I told you that I still don't find my science mind trying to break it down better. I have always dealt with things by visualizing what is happening at the cellular level, a picture of the cell in my mind and how it looks, how the little sodium or potassium ions looked going back and forth, how the t cells and b cells looked as little travelers and warriors. I can't do that with Wegs and it makes me crazy. So...... I play Jacks post in my head and I try to get over it and find my new normal.

    Lot's of rambling, can you tell I haven't been able to get past 40mg yet??? I guess it's better than the 60 but pred head is still in full swing.

Page 5 of 7 FirstFirst ... 34567 LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •