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Author Topic: Hi I'm new  (Read 3460 times)

Ali Dewar

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Hi I'm new
« on: July 21, 2010, 09:43:19 AM »
Hi everyone  :)

My name is Ali and I'm investigating SS for my husband who has very atypical MS and sero-negative APS.

He has seizures,hoarsness and loses his voice and is very difficult to hear. He also has dermatitis herpetiformus. I have read that SS is a rare complication of DH-which is also an auot-immune disorder. To be honest the list goes on!

We live in South -West Scotland but are travelling to London for appointments. We found no-one was listening to us here  >:(

I look forward to hearing from you.

Ali x
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Cheryl

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Re: Hi I'm new
« Reply #1 on: July 21, 2010, 11:11:18 AM »
Ali,
   I hope that you find the answers you need for your husband.   Maybe one of our members from the UK can recommend a good doctor.   Hang in there!
Cheryl
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Shani

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Re: Hi I'm new
« Reply #2 on: July 21, 2010, 02:48:12 PM »
Welcome!I'm sorry that your husband is going through all this, and you of course too.Never give up on trying to find a good doctor that can help you and your husband.
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Joe S.

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Re: Hi I'm new
« Reply #3 on: July 21, 2010, 03:38:36 PM »
Welcome. I believe that scottietottie lives in Scotland but is currently in London with her daughter.
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Blue Kat

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Re: Hi I'm new
« Reply #4 on: July 22, 2010, 12:09:37 PM »
Welcome, Ali!   :)
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Bucky

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Re: Hi I'm new
« Reply #5 on: July 22, 2010, 01:45:39 PM »
Hi Ali,

I'm sorry, I don't live in Scotland  (I live in the U.S.A) - so I can't help you with any doctors, etc.  Like Joe mentioned, one of our Staff Moderators lives in Scotland but she is away for a few days.

It is so frustrating, isn't it, when doctors don't "get it", don't listen or can't offer any help to the health issues that come up?  I am fortunate that my doctors are all very helpful.  For those who don't have the blood markers of Sjogren's, they have a difficult time finding doctors who will listen and treat them based on symptoms.  (I have positive bloodwork.)

I'm sorry your husband is dealing with a lot right now - but, he is fortunate to have you doing research on the web on his behalf.

I hope you are able to find doctors that you are happy with and who treat your husband with respect and compassion - which he deserves.

Bucky 
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bestamor

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Re: Hi I'm new
« Reply #6 on: July 23, 2010, 11:28:35 AM »
hello ali, i am brand new as of today.
i have been pretty overlooked by dr.'s up to now.
i see that i am going to have to be my own advocate with this condition!
some of my symptoms are more than a nuisance.
i  am not taking any drugs for this condition. most of the side effects scare me!
i live in a rural area so our medical care is ...........rural! fill in your own definition.
i am looking forward to talking to others about this.
thank  you for being there
bestamor
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Joe S.

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Re: Hi I'm new
« Reply #7 on: July 23, 2010, 01:15:49 PM »
bestamor, welcome. You can look at my signature for some alternatives that seem to help me.
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bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

lynnmarie219

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Re: Hi I'm new
« Reply #8 on: July 25, 2010, 08:14:17 AM »
Welcome Ali and thank you for coming here for information and for being there for your husband! Any questions you have...you can enter a key word in the search box in the upper right hand corner and get many responses/posts which will offer you alot of information! Good luck to you!

Also welcome to bestamor....feel free to jump on in whenever and wherever you feel comfortable...this is a very safe and informative place to be....so read away and ask any questions that come up!
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Chickpea

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Re: Hi I'm new
« Reply #9 on: August 09, 2010, 04:02:40 PM »
Hi Ali

Sorry I've been slow to add my welcome.  I live in Brighton on the south coast of Britain, so the wrong end of the country for you but nearer than most!

I'm really sorry to hear that your husband has such a horrible combination of AI issues and symptoms.  How awful that no doctors in your area were willing or able to listen to you.  Who does he see in London?  Is it an MS specialist or someone who looks at a range of AIs?  Have you been to the neurological hospital? 

I started out with an MS diagnosis - they thought it was primary progressive MS - but follow-up MRIs didn't show the sort of progression they'd expected.  A lumbar puncture didn't show the oligclonal bands they expected to see.  I was in diagnosis limbo for a few years until my neurologist sent me to a rheumatologist colleague who stuck two pieces of blotting paper in my eyes.  5 minutes later I had a SjS diagnosis!  I have mobility issues very similar to MS, as well as tremors and weakness plus all the usual AI issues.

I'd be happy to correspond with you about possible treatments etc if you'd like to PM me or reply to this message.

Take care - Chickpea
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Scottietottie

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Re: Hi I'm new
« Reply #10 on: August 09, 2010, 06:15:35 PM »
Hi Ali  :)

Welcome to Sjogren's world!

The women who founded this site were both dxd with MS but turned out to have Sjogren's. Unfortunately it is also possible to have both.

I'm in the UK - north east England but I'm afraid I don't have a docs recommendation.  If you ever want to talk in 'real time' though - Sjogrensworld chat has a hosted chat on Wednesday evenings at 7p.m. UK time.

Hope you find the site useful.

Take care - Scottie  :)
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