Author Topic: What's up  (Read 3081 times)


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What's up
« on: May 22, 2008, 06:33:59 AM »
Hi all, hope everyone is doing ok. I have a query. I have ben having trouble on an off for about a year now. Of coarse with sjs there are many different levels of trouble but this one bothers me allot. I am a pretty posative and happy person sjs does knock that around sometimes but in genral when I am feeling better physically I am good to go.
In the last year though there is something going on where from nowhereand very suddenly, I start not sleeping well, having strange nightmares, waking up from some kind of seizure like state. There is a feeling of fear or anxiety.  Muscles feel tight, there is pain everywhere, my skin is very hot and I am dry, dry, dry and drink so much water I feel waterlogged. I have trouble with breathing and a strange painful cough without a cold. All this changes my mood. There is a feeling of fear and what is wrong now? :o It also causes big problems with my stomach. It just stops working, I feel sick/full if I eat a few bites, I have to force myself to eat. My bowel also gets messed up, pain, bloating constipation and then switching to frequent BM's. And terrible fatigue, sleepy and lethargic.
I not believe this is depression although my mood obviously worsens because of it . It comes on so fast and as soon as things subside I am back to my old self. Last week I was gardening, bike riding, enjoying spring, getting on just fine and this week not so much? ??? I have been waiting forever for a proper neuyrological visit. Is it possible that this is a physical, nervous system thing that causes this? Anybody deal with anything like this? thanks Sandra


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Re: What's up
« Reply #1 on: May 22, 2008, 04:06:01 PM »
Hi Sandra~~Well that does not sound very pleasant!!  There are so many things going on at once I could not begin to sort it out.  Hopefully you can get into a neurologist soon.

I was having seizures in my sleep...daytime now also....It woke me a lot and I would feel very out of sorts and nauseated.  You seem to have more going on.

My up and down depression seemed to lessen when I was prescribed a medication for the seizures.

I hope that someone can get this all sorted out for you so you have better days.

Take great care now~~~Shari


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Re: What's up
« Reply #2 on: May 22, 2008, 04:43:13 PM »
Hi Sandra  :)

Forgive me - I have a lousy memory - and I can never remember approximate ages of people in here. The feelings you are describing sound very like I felt when I was going through the menopause and also when my thyroid was going wrong (all mixed up with SjS/Lupus - so it's hard to sort out what is causing what)

Could you be perimenopausal or menopausal? Have you had your thyroid checked recently? Just a couple of ideas. It sounds like checking it out with your doc might be an idea.

Take care - Scottie  :)   (our home page)   (find our chat times here!)  (way to chat + nickname and #Sjogrensworld)

Never do tomorrow what you can put off till the day after tomorrow!


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Re: What's up
« Reply #3 on: May 22, 2008, 04:46:38 PM »

I think this should be checked out pronto.  What you described is not depression.


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Re: What's up
« Reply #4 on: May 23, 2008, 09:00:34 PM »
How are you doing today Sandra? :)~~Shari~~


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Re: What's up
« Reply #5 on: May 24, 2008, 07:54:38 PM »
Hi all thanks for the posts, well I had to go see my gp on Thursday. I was really feeling bad, nausea, couldn't eat and I thought I had a UTI. Turns out I did, so I am on macrobid. We discussed the issue again as it started in Nov/07, I ended up in the ER about 4 times over Christmas including 3 UTI's. That's were they all came up with "a motility issue". Gave me domperidone (sp?) and doubled my tummy medicine Losic. So I got slowly better.
But my gp is also thinking neurologist, said that if my rheumy didn't let me know by next week of a referal to call her back and they would try. We have a real terrible problem her with doctors and worse with specialists. I have to drive to be able to see a specialist. No big deal but the wait times are sometimes 6months or more.
My gp and I talked of MS but I don't think so and she said that if I get all better between these episodes that MS isn't likely. I do get tremors and sleep issues etc but my rheumy would have checked into all that I just got to see her since Nov 2006 and she tested me upside down and inside out so it can't be MS. I do have a wonky liver, I have been told I have Primary Biliary Cirrhosis by a Toronto specialist, but when I transfered to Kingston in 2006 I was told byt the liver specialist after doing all kinds of tests that "perhaps you do have PBC but right now it is inactive" so I just have bloodwork done with my gp for now. I am really not sure whether a liver problem could explain these episodes?
My body the mystery.... ::) thanks, and will be happy to hear any ideas or suggestions. Sandra


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Re: What's up
« Reply #6 on: May 24, 2008, 09:35:30 PM »
Hi Sandra,

Wow, its sounds like you've got a lot going on - wish I had some ideas but it sounds as though you have some appointments coming up which might help you figure it out.

Keep us posted, and I hope you're feeling better soon - Julia