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Old 11-12-2006, 02:12 PM   #1
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For Twisten

Hi Twisten

im sorry to hear about you going into hospital.

What appened, why did you have to go in?

 
Old 11-12-2006, 04:55 PM   #2
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Re: For Twisten

Hi Sharon I was wondering where you were hiding out!! Long story so hope you got time to read it. I had an appointment with my GP on Friday, Nov 3 to have some meds refilled. About a week before this I noticed I was having vision problems. I can't remember if I posted about them or not. Anyway, I was seeing double, very dizzy, falling over, unable to watch tv. I had to cover 1 of my eyes to see the tv clearly. I could see things fairly clearly if they were close (other than the tv) but anything from a distance was either very fuzzy or 2 of everything so I mentioned this to my doc. She checked my eyes and noticed my pupils were hugely dilated and also that I have cataracs. She wanted me to get blood work done and then she would try and set me up for an appointment for the following week with an eye doctor. I went and had my blood work done and about an hour later I got a call from her wanting me to go see an eye doctor that day and then after that I was supposed to meet an Internal Specialist at the ER. I couldn't make the eye appointment because I was vomitting and such but I did see the IS doc in the ER. He admitted me to the hospital right away and made arrangements for me to see an eye doctor at the hospital the next day. To make a long, long story a bit shorter they now suspect I also have lupus. My face right now is broke out in what looks like fever blisters. I also have them in my mouth, throat and nose. The nerves and muscles around my eyes are inflamed which is what is giving me the vision problems. I noticed for a year or so that every now and then I'd get a strange rash across my face but just thought it was sunburn. I guess it could be this butterfly rash that is a characteristic of lupus. I definitely have more going on than just the crohns now though. I guess my bladder problems somehow are a symptom of it also. The plus side to all this though is that it just may be from the steroids (but they doubt it). Why they would say that just to smash a person's hope is beyond me. If it is steroid induced it will go away when I'm off the pred. They did some kind of blood test to see if it is lupus but I won't know for over a week. If it's not then I guess they start looking at other things such as Addison's and I can't remember the other ones he named. I have to go lay down for a bit but I'll check back later to see if you've replied. And how was your week??
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Old 11-12-2006, 05:02 PM   #3
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Re: For Twisten

Hope everything goes well for you Twisten!

 
Old 11-13-2006, 12:13 AM   #4
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Re: For Twisten

hi Twisten

I hope they start to find out what else is wrong with you soon. and hopefully you are feeling better than what you did.

Some information for you, before I found out I had crohn's my consultant ran a whole load of tests for Addison's disease, they were convinced this is what I had. The majority of my symptoms matched Addisons and they also tested me for Lupus.

For the addisions test i had to have a series of bloods taken before and after being injected with some type of adrenaline, Addisons is when the adrenal glands don't work properly. All of them tests came back clear. My consultant was stumped because he was sure it was either that or Lupus. So i wonder if there is some link between them.


I hope it isn't lupus or addisons, look after yourself

Sharon

 
Old 11-13-2006, 07:58 AM   #5
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Re: For Twisten

The thing with these other blood tests Sharon is that one doctor says if the blood test is negative for Lupus I don't have it but then another doc says it doesn't mean that at all and that they have to take symptoms into account also. It sounds like its a very confusing disease to get diagnosed with. I was also told because crohns is thought to be an auto-immune disease it predisposes us to other ones. Aren't we the lucky ones lol!! I've been trying to read up about it but I have to admit I think I'm more confused now than when I started.
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Old 11-13-2006, 08:27 AM   #6
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Re: For Twisten

I understand completely

Every illness i get now all i can do is put it down to the crohn's, solely because it is thought to be an auto immune disorder. Which in a way makes sense, the body can't fight off infections like it can in people who don't have crohn's therefore makes us prone to other illnesses.

What i have found is that having crohn's it i alot the responsibility of the person with the disease to keep them self healthy and try to do the best to avoid infectious illnesses, i mean there is only so much medication can do.

I have bad joint pain at the moment, stopping me from sleeping properly and again i put down to the crohn's even though i am in remisssion, i was told nothing can be done to prevent the joint problems related to crohn's even though a person is in remisssion.


It's all fun and games having this crohn's. I am seriously thinking about seeing if i fit the criteria for disability benefits. I have only done one shift at work and i am feeling the effects of it.


Do you work?

Sharon x

 
Old 11-13-2006, 12:19 PM   #7
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Re: For Twisten

I haven't worked now, outside of the house that is, (we all know that's a full time job in itself!!) for about 5 years. I've been thinking about applying for government disability also. I had disability through my employer but that ran out about 2 years ago. You're in England aren't you? I'm in Canada and I'm wondering how similar our disability plans would be. I know I fit the criteria here in Canada for disability but getting approved for it is something else. My job was very stressful and at the end I was spending more time in the hospital than either at home or at work so the decision was pretty easy for me to make. You have to do what is best for you right now. I agree about the responsibility being on our shoulders to look after ourselves as best we can, after all these are the only bodies we get. And I totally hear you on the joint pains. My hands are so bad right now that my husband is opening most of my pill bottles for me. I also have something really weird that happens with my hands. I don't know what its called but when I'm carrying something all of a sudden my fingers will release and I drop whatever I was holding. It could be a pen, a cup of coffee, whatever. It is so weird when that happens because there is no warning at all. I've probably dropped more coffee than I've drank!! I think they tried every anti-inflammatory out there to try to help with the joint pain but they only made my crohns worse and didn't do much for the joints anyway. Do you get sacroilitis also? I get it so bad sometimes I can hardly walk. Well, I didn't mean to write a book here to you so I'd best go. It's so nice having someone else to talk about things with and to have someone actually understand what we go through is priceless. Looking forward to hearing back from you.
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Old 11-14-2006, 01:25 AM   #8
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Re: For Twisten

Well i decided last night that i would put a claim in for disability benefit. I have just done it online and will wait and see, i guess there is no harm in trying.

When you said about dropping things, your hand just opens and you drop whatever you hold, i suffer from that, but only in my left arm. I have been told that it is caused by the problems i have in my left shoulder, my left hand is weaker than my right. My shoulder grinds everytime i try reaching for things and sometimes it clicks on movement. I just hate the joint pain.

I really do feel that the crohn's has alot to do with my joint problems, i mean i get enough calcium and other essential vitamins inside me so that is the only reason i can think of.

It just worries me, i am 30 years old with all these health problems, problems that cant be cured and will only get worse over the years. What is a person meant to do?? Everytime i go to see my doctor (who is brilliant i must add) he says to me "sharon you are only young you shouldn't be going thorugh this, just seems unfair" but there is nothing to be done.

I think i am feeling abit down lately, just fed up of it all.

With regards to the anti inflammatory drugs, i cant take them now due to me being on questran, i spend alot time in the bath trying to ease my joints.

 
Old 11-14-2006, 02:57 AM   #9
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Re: For Twisten

Hi sharon have you been tested for rheumatoid antibodys RA, I know someone with crohn's, underactive thyriod and RA.

As you know I have a underactive thyroid and a ABNORMAL rheumatoid antibody level, and I get realy bad joint pain.

Have you had your thyroid tested lately???

sending ((((((((((((((((((((hugs)))))))))))))))) ))))))) to both of you...Mandy

 
Old 11-14-2006, 07:51 PM   #10
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Re: For Twisten

MadMaz, what kind of symptoms do you get with an underactive thyroid? I don't think I've ever had my thyroid tested. I apologize for any spelling or grammar errors tonight. My eyes are really acting up tonight and its pretty har to type when you can't see things properly.
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Old 11-17-2006, 04:13 AM   #11
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Re: For Twisten

Hi twisten, The list is so long, it can slow down every part of your body from your head to your toes.

I was so ill it was like I had the flu real bad in the end I realy did feel like my holke body was slowing down , you should go get your thyroid tested if you have one Autoimmune, you are more likely to get another..Mandy

 
Old 11-17-2006, 09:28 PM   #12
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Re: For Twisten

Thanks Mandy, I'll definitely ask my doc to check the thyroid and see it its normal or not.
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