What's up

[Sandra]

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? 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

[Shari]

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

[Scottietottie]

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 

[JannaLee]

Sandra,

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

[Shari]

How are you doing today Sandra? ~~Shari~~

[Sandra]

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

[Annj5]

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