Page 15 of 20 FirstFirst ... 51314151617 ... LastLast
Results 141 to 150 of 192

Thread: Siezures

  1. #141
    Join Date
    May 2011
    Location
    Cumbernauld Scotland
    Posts
    89
    Thanks
    180
    Thanked 59 Times in 47 Posts

    Default Hi Guys seen Rheumi y'day

    Hi All seen rheumi yesterday and no thanks to the useless hospital we were at we now have yet another hold up (we appear to have 2 different biopsy results) one has diagnosed Lupus Nephritis SLE stage 4 and the other is mesangiocapillery glomerilonephritis-please excuse terrible spelling) basically the nephrologist at the bad hospital sent a letter to Alans GP saying lupus nephritis sle stage 4 and sent a letter to the rheumi saying the other thing which im not even going to attempt to spell again lol!! So we now have to wait till the new nephrologist has a look at the biopsy results and makes his own diagnosis before we can commence with the suitable treatment so its going to be a bit of a waiting game again to get proper diagnosis but at least we are still on the right track just going to take a wee while longer to sort things out. Hope everyone is well take care Mary.x.

  2. #142
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default

    Oh Mary! This has just been a nightmare experience for ya'll! What date is the biopsy scheduled? One thing that upsets me the most about this disease is that too many people that are TREATING us have no clue what they are doing! It is like they have never heard of Lupus! Too often I see the same thing happen to me happen to others and it infuriates me! Instead of helping us get well they wait and let us get worse and worse while they try and LEARN watching us.

    How are the seizures? Did they ever get those under control?
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  3. The Following User Says Thank You to tgal For This Useful Post:

    MaryS42 (07-30-2011)

  4. #143
    Join Date
    May 2011
    Location
    Cumbernauld Scotland
    Posts
    89
    Thanks
    180
    Thanked 59 Times in 47 Posts

    Default

    Hi He's not having another biopsy they are going to ask for the slides from the biopsy he got in Jan this year and look at them and make their own decisions as to what exactly Alan has and then once they are happy they will start treating him accordingly. Luv M.x

  5. The Following User Says Thank You to MaryS42 For This Useful Post:

    steve.b (07-31-2011)

  6. #144
    Join Date
    May 2011
    Location
    Pennsylvania, USA
    Posts
    879
    Thanks
    409
    Thanked 270 Times in 194 Posts

    Default

    Quote Originally Posted by MaryS42 View Post
    Hi He's not having another biopsy they are going to ask for the slides from the biopsy he got in Jan this year and look at them and make their own decisions as to what exactly Alan has and then once they are happy they will start treating him accordingly. Luv M.x
    Thank you Mary for keeping us posted I sure hope you get to the bottom of everything soon. The waiting is exhausting.

  7. The Following User Says Thank You to lovedbyHim For This Useful Post:

    MaryS42 (08-01-2011)

  8. #145
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default

    Thank you for the update. I know this has to be a nightmare for both of you. Hopefully things will get worked out very soon!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  9. The Following User Says Thank You to tgal For This Useful Post:

    MaryS42 (08-01-2011)

  10. #146
    Join Date
    May 2011
    Location
    Cumbernauld Scotland
    Posts
    89
    Thanks
    180
    Thanked 59 Times in 47 Posts

    Default

    Hi guys

    Breaks my heart to say it but Alans seizures have started up again and he's been off mycophenolate for over a month so we can safely say its not that. So we have come to our own conclusions that its looking like Lupus attacking the brain and his rheumi agrees with us so he is going to arrange for further tests as we need to get a definate answer as to the cause of them will keep you all posted . Love to all M.x.

  11. #147
    Join Date
    May 2011
    Location
    Pennsylvania, USA
    Posts
    879
    Thanks
    409
    Thanked 270 Times in 194 Posts

    Default

    Oh Mary....huge hug for both of you.

  12. The Following User Says Thank You to lovedbyHim For This Useful Post:

    MaryS42 (08-01-2011)

  13. #148
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default

    Quote Originally Posted by MaryS42 View Post
    Hi guys

    Breaks my heart to say it but Alans seizures have started up again and he's been off mycophenolate for over a month so we can safely say its not that. So we have come to our own conclusions that its looking like Lupus attacking the brain and his rheumi agrees with us so he is going to arrange for further tests as we need to get a definate answer as to the cause of them will keep you all posted . Love to all M.x.
    Hi Mary. I am so sorry to hear that his seizures. That is so very hard to deal with (on the patient and the family. I too have seizures. I went to every doctor trying to find out what is wrong. It just seemed like no one knew what they were doing! I started to begin to think that I was simply crazy! Finall I found a doctor that looked at me and said "well of course they can't find anything. This is being caused and inflammation of the arteries. When they get inflamed they don't send enough blood to the brain and you seize." Hmm.. very interesting that no one before you figured that out! I am still on anti seizure meds which has helped but my steroids help more then anything.

    I hope Alan finds a doctor that has an "AHA" moment and gets him on the right meds
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  14. The Following 2 Users Say Thank You to tgal For This Useful Post:

    MaryS42 (08-01-2011), steve.b (08-01-2011)

  15. #149
    Join Date
    May 2011
    Location
    Cumbernauld Scotland
    Posts
    89
    Thanks
    180
    Thanked 59 Times in 47 Posts

    Default

    Hey Guys

    Has anyone heard from Terry(peridot20_gem) havn't seen or heard from her on here for a while and was a bit worried and also can't seem to send her a private message if anyone can help i'd appreciate it thanks Mary.x

  16. #150
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,897
    Blog Entries
    1
    Thanks
    1,387
    Thanked 1,610 Times in 1,102 Posts

    Default

    mary, terry has parted company with us.
    she no longer comes to our site.

  17. The Following User Says Thank You to steve.b For This Useful Post:

    MaryS42 (08-04-2011)

Posting Permissions

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