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hi folks sorry i havnt been around for a while but my daughter got married in manchester in september and with the sheer stress and exhaustion of the wedding it has taken its toll on my already wreck of a body:faint:, anyway heres an update on my healthi have been diagnosed with irritable bowl syndrome no meds from doc for this, defficient in vitamin d calcichew d3 forte given, osteopaenia, abnormal liver function test results, tested pos for anti smooth muscle antibody, dry eyes and mouth glandosane and viscotears given, depression fluoxetine given, weak bladder detrusitol, solpadol for pain, lactulose for constipation,other symptoms, pain throughout body, exhaustion, brain fog, dizzy spells and spasams tremors in hands, bizzarly spasams in vagina occasionally, early menapause at thirty, recently assesed by phsyio and given a walking stick to aid with pain and balance, also very itchey skin and im left with bruises after scratching.alas i have an appt on sat 8th nov o8 with rheumy my 1st i would be greatfull for any advice on questions to ask or info on what to expect as i want to get the most out of my appt and i would like them to take me seriousley having been given a very difficult time through my gp, i would also like to say i feel very embarressed about my health im only 43 yrs and i feel like an old woman i feel self consciouse using my stick and i get very depressed and angry with myself and i wonder what the future holds for me:sigh: thanks anna ps hope your all well
 

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Hi there and first good luck at your first appointment with your rhemo.

A great thing to do is bring a list of your symptoms, medical history of your family and yours, and any records/tests you have. Also if you have taken any pics of any redness, swelling or rashes.

I know that we can't help but wonder what will happen in the future, but I tell myself that even the healthiest people do not know that answer and we are no different. I try to stay in todays world and not look to far ahead regarding health.

Of course keeping the stress levels down are important too but hard to do at times.

I do not use a cane so I cannot honestly say I would feel about it and I am 37. I can only say that I try to keep positive despite everything and that I would hold my head up high using it. Maybe decorate it a little too. We did this for my friend and it was quite fashionable. Look at it as for now you have to use it. Does not mean that things won't change for the better. Perhaps this appointment will give you some answers and you will get the proper treatment to start to feel better.

Another thing for the rhemo if you feel that he/she is not going to help you, ask for a referral to someone who can and say that you cannot live your life like this and need help desperately. It may help to bring along someone to your appointment as well.

Good luck and I will keep you in my prayers.
 

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Discussion Starter #3
hi paula thanks for your reply, ive already done a list of symptoms and test results but not family history so thanks for that tip, what i find frustrating is because i look ok people think im fine they just dont know how i feel. thanks for your help and prayers.anna x
 

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Hi Greenheart..
I really hate to suggest yet 'another' autoimmune condition to you to worry about... but the dryness you speak of stood out to me. Have you heard of Sjogern's disease ? I have secondary sjogern's it as an overlap of my mctd. The eye, mouth, throat dryness are my main complaints.. But its not just dryness it has other significant symptoms and unfortunately rarely diagnosed. If you 'google' it you will prolly find more info... I hope you get a caring doctor and some answers quickly... I use Biotene products for my mouth, comes in mouthwash, gum, toothpaste.. Good luck
 

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hi blue, yes i have heard of sjogerns disease and it has been suggested that it could be that or connective tissue disease they maybe the same thing im not sure, i havnt heard of biotene it may be an american brand as iam english,what are the other significant symptoms blue. thanks anna x
 

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Hey there,

Congratulations on your daughter getting married in September :bigsmile: !

I'm sorry to hear you're so unwell at the moment though.... :(

Re the cane thing; I think I can relate to your troubles there a little bit. I am 23 years old now; blind since last year and have thus been walking with a white cane for about a year now. I agree with you; going out with a cane isn't easy, at least not at first. It's not the cane itself that creates problems though, as much as what the cane represents if that makes any sense. A cane for you might be hard evidence that you have mobility and balance problems and holding it in your hand forces you to see the problems clearly, deal with them and eventually accept them. And that's not a pleasant process at all, nor a process anyone wants to go through in life!

I hated my cane at first. The first week I had it I was in hospital; I would try walking up and down the corridor outside my room and I'd think all eyes were on me and that everyone was staring. I was also incredibly ashamed and really out-of-this-world mad for a little while.

Emotions like that are pretty normal in situations like this for a short while and there's nothing wrong with feeling mad or sad or ashamed or miserable for a little while as long as you don't allow those negative emotions to dominate your life and take over your world. I think the loss of chunks of our mobility, much like the loss of one of our senses, are situations sometimes processed by us as a kind of little death of sorts. I know that probably didn't make any sense but what I meant is that when someone close to us dies, one has to grieve and give themselves time to process the loss to get to the other side of that grief and onto feeling ok again. I think what you're going through at the moment might be pretty similar from a psychological point of view.

Requiring a cane to walk and having mobility problems are both big losses at any age, but they are not losses of one's character or self. They are only losses of mobility and balance and nothing else. That idea might take some time to sink in however! I definitely don't mind my cane at all now, nor do I really mind being blind anymore. Sometimes I think people are looking when I walk down the stret with my cane sure, but I'd like to think that they're not looking at my cane but that they're looking at me. Maybe because they like what I wear, or they like or don't like my hair, or they think they know me from somewhere or just because they think I'm cute :lol: ! That change though from being mad and sad to being back to normal, for me at least, did not come about miraculously one day; it took a lot of thought and patience and setbacks and mainly a lot of time to just adjust and accept the idea of this new reality that was before me...

Not sure if what I wrote above makes any sense whatsoever to you or not. I apologize if it doesn't as I fear it may come accross as a page of half formed thoughts.

In order to avoid putting you to sleep with such a long post I'll conclude here by saying that you should definitely discuss your mobility and balance problems with your rheumy on your upcoming appointment and I really do hope your balance and mobility can improve with the proper treatment :rolleyes: !

No matter what happens with your mobility and balance though, things will improve for you psychologically in time. Life does go on cane or no cane. Being ill is nothing to be ashamed of. Having a cane or wheelchair is nothing to be ashamed of either.

Re your doctor appointment it might useful to make a list of your new symptoms and any new meds you're on since you last saw the rheumy. That way you won't have to worry about forgetting anything or struggle to remember everything during the appointment!

Hope the new meds help you loads with your symptoms and that you have a productive appointment with your rheumy on the 8th!

:flowery:

Zoi

Ps. Also on a lighter note one of the pluses of having a cane is that while I really don't think anyone at all will look at you funny when you walk with your stick, if they do you have something to conk them on the head with so they don't try it again :wink2: !
 

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Hi Greenheart, Yes, I was diag with mixed connective tissue disease (mctd) and sjogern's is one of the 4-5 AI conditions it overlaps with, SLE, scleroderma and raynauds are the others that I have some symptoms of... It's a nice mix :lol:... most of the time I don't know what is from what..

Sjogern's can cause inflammation lungs such as pneumonias, kidneys and liver inflamation. Dental problems because you do not make enough saliva so you can get more cavities and gum probs.. vision problems from tissue damage and scratched retina all due to dryness. Swallowing problems, I feel like I have a sore throat all the time despite how much I drink.. and general tissue damage which just makes me achey...

The constant dryness of my mouth and eyes and peripheral neuropathies in hands and feet from sjogern's are the main ones for me... Add a few symptoms from the other 4 and some days I'm really miserable.. but then other days... I'm not bad at all...
I hope this helps...
 

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Discussion Starter #8
thanks zoi, my problems are nothing compared to what you have had to cope with, what you have said makes sense and puts things into perspective you seem to have coped with your dissabillity with grace and dignity and i applaud your courage:more: thankyou for your words of wisdom i would like to know how you lost your sight if you dont mind telling me, please drop me a line now and again for a chat. anna :)
 

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Discussion Starter #9
hi blue, i have had pneumonia 3 times the last time was 2002, i also have liver problems and sores in my mouth amongst other things. thanks anna x
 

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Hey Anna,

I lost my sight because of recurrent bilateral optic neuritis (plural) due to lupus and aps.

Hope you're feeling a little better! :)

:flowery:

Zoi
 
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