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Holmes - Adie's Syndrome   Message List  
Reply | Forward Message #1081 of 1249 |
Hello - I am new to this group and would like to join in. I was
diagnosed with Adie's Pupil 14 years ago, but may have had it longer.
Just a bit ago, unrelated to Adie's, I had a CT scan, that led to a
MRI, that led me to demand from my doc. to refer me to a neurologist.
(my doc's relpy to my MRI was - every body is different)The
neurologist diagnosed me with Holmes Adies Syndrone. I honestly don't
know how long I have had this syndrome because I have obviously been
misdiagnosed for years. My symptoms are getting on the severe side as
the years pass - though I just deal with them and go on with life. I
have been told I have Fibromyalgia (excuse the spelling if incorrect)
also been told that everything is stress or stress related, looked at
like I was insane, and told by doc.s that they had no idea what I was
talking about. I honestly am not very trusting in the medical
rofession since they seem to make so many mistakes with me. I still
need to go back and read all of the messages in this group to get up
to speed, and also learn as much as I can about this *syndrome*. I am
doing as much research as possible in these last couple of days
since being diagnosed. The neurologist did say that he wants to see
me in six months to ess if I get worse and how much worse I get. He
did say that I will probably be using a cane one day. I just cannot
relate to that and am going to fight this thing.
Does anyone out there know anything about Holmes - Adies
Syndrome other than what can be read on the internet? I've got a lot
of work to do, but was just wondering. How bad does this really get???
Thanks For Listening!







Mon Jan 9, 2006 7:26 pm

ozzymommy1962
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Message #1081 of 1249 |
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Hello - I am new to this group and would like to join in. I was diagnosed with Adie's Pupil 14 years ago, but may have had it longer. Just a bit ago, unrelated...
ozzymommy1962
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Jan 9, 2006
10:49 pm

Hi Sorry but i don't know your name. I don't know anything more about adeis than whats already on the internet and group, there isn't anything much about this...
michaela_rees
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Jan 11, 2006
9:52 am

Michaela, My name is Rita. Adies can be painful and alot more. You basically have to try to heal yourself. And you can I believe, or at least get to a point...
Rita Cullum
ritac42
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Jan 11, 2006
9:12 pm

Thanks Rita I do all the things you have suggested, but its still very bad. On the Adeis side does anyone get pain and tenderness in the temple area, and...
michaela_rees
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Jan 12, 2006
10:38 am

Sorry to hear that you are suffering. Micheala, you mentioned emotional stress. I've never heard that stress causes Adie's, but I'll bet it can make it feel...
linja@...
lajavins
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Jan 13, 2006
4:37 am

Thankyou Linda I will try to do more things to relax, i think your right about stress not causing Adeis, because there are so many people under stress, so ...
michaela_rees
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Jan 13, 2006
7:44 am

Michaela: Why don't you try the PIlocarpine drops? Try them--they may be just what will ease many of these symptoms you are experiencing--I hate to see you...
jm44dog@...
jmdog2004
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Jan 13, 2006
8:07 am

Hi Julia I have tried pilicarpine, but i still got the pain and when it srunk my pupil down, i got pain from that too and also i was getting tightness across...
michaela_rees
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Jan 13, 2006
8:20 am

I mostly had unequal vision in both eyes while using the pilocarpine in my Adie's right eye--what strength PIlocarpine did you use? I have gotten the best...
jm44dog@...
jmdog2004
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Jan 13, 2006
8:55 am

--Hallo Michaela, I had very similar symptoms and now I use a very low dosage. I get drops from my pharmacy that contains 2 ml Pilocarpin 1% drops in 8 ml of...
pesuwue
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Jan 15, 2006
3:17 am

Hi Petra I used a low dose of pilocarpin yesterday, and i did't feel as bad this time, i think it helped me a bit outside in the natural light, but when i went...
michaela_rees
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Jan 15, 2006
7:44 pm
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