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New Symptons


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#1 Sally

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Posted 27 October 2006 - 06:31 AM

Hi, Sally here. I have several new symptons that have developed over the past four months. I wll explain them to you, and if anyone has had the same ones, or does anyone think they are Scleroderma related. I have been losing my balance, falling down if I bend over to pick some thing up, and bumping into things. Also, I want to sleep around the clock, I have been going to bed at eight each night, and can hardly get up by six, and that's an hour later than I should for work. I have always had fatigue with Scleroderma, but this is so different,I get to a point around One Oclock that I literaly can't keep my eyes open, if I try to eveything blurs. If I am able to I leave work and go home and sleep, I don't mean just dozing, sound asleep. Weekends I sleep almost the time. I went off several drugs that thought might be causing it, but so far I haven't seen any improvement. The last thing, I dont mean to ramble but I am so frustrated. My urine was coming out in very slow stream, took me forever to go, so the Dr. ordered me to come in for a test. The short of it is, I had to drink four 16 oz. glasses of water, the ultrasound was only showing 100 mg. and she wanted it at 150, but she said lets see how it looks. So I went into the bathroom and voided on a seat that catches the urine. I sat there until I was sure that I couldn't get one more drop out and course felt my bladder was empty. I go back into the room, and the Dr. says ok let's see where we are now. She moving the piece all around, again and again, and said something is dramaticaly wrong here. The ultrasound was reading at 330mg, which is a full bladder. Of cours I am going to A urologist on Monday, but does Scleroderma ever affect the bladder? Thanks for listening to me, if anyone has any ideas please share them with me. Love, Sally

#2 Heidi

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Posted 27 October 2006 - 07:14 AM

Hi Sally,

I am so sorry to hear about your recent symptoms. The falling and feeling unbalanced sound to me (and I am NOT a doctor) like there may be something neurological going on.

I checked our Sclero A to Z website to see what I could find about bladder problems related to Scleroderma. The only thing I could find was references to Interstitial Cystitis (Bladder). I have copied a link below for you to go and look at. I wasn't really sure if it fit your symptoms, but thought you might like to read that page and some of the articles we have there.

http://www.sclero.or...tis/a-to-z.html

Please do keep us posted on what you learn from the urologist appointment.

Warm wishes,
Heidi

#3 Sweet

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Posted 27 October 2006 - 07:17 AM

I don't know if it's from the sclero, but I have what I call "brain fog" a lot and during that time, I seem off balance, fuzzy, miss the doorway sometimes and slam my shoulder against the wall. I always laught and say "Wo moved the wall!!"

Sorry you are experiencing this, I would surely mention it to you provider.

Love Sweet

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#4 Sue

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Posted 27 October 2006 - 07:57 AM

Sally,

Sorry to hear that you are having these problems. I would suggest that you have your thyroid checked if you are that tired, if you haven't already. An underactive thryoid can create a lot of problems. I have an underactive thyroid and had a lot of bladder infections before treatment. Just a suggestion!!

I wish you the best!!

Sue

#5 Sally

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Posted 27 October 2006 - 08:03 AM

Thank you Heidi and Sweet for getting back to me so soon, I will check the website you sent, thanks. I also forgot to mention that I am having short term memory loss, that has me very concerned. I can't remember names, numbers, what day it is, get in the car and go somewhere and don't know why I am there, and everyone says my eyes look different. I went to the neurologist, she did Mri of brain and an EEG, all normal, next we are doing a sleep study for the memory and sleep issue, thinks they may be related. Thanks again for the help, appreciate all I can get, Love, Sally

#6 Sally

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Posted 27 October 2006 - 09:03 AM

Sue, thanks for the suggestion, I will definately have them do blood work for the thyroid, never even thought about that, thanks to you all for your help, Love, Sally

#7 debonair susie

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Posted 30 October 2006 - 09:53 AM

Hi Sally and Everyone else,

This is really something... I don't get too many opportunities to post, but when I do, it's because there is a thread that has hit right on what I've been having trouble with!
I am going to get in touch with either my primary dr or my rheumatologist and bring this up... about Interstital Cystitis. Here I've been thinking I might have a bladder infection (which I still may). However, as you all know... it's so hard to distiguish between infections and illness that connects to our Sclero, etc.
Thank you for posting the thread too, Heidi.
Hugs, Susie
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#8 Beanpole

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Posted 31 October 2006 - 04:53 AM

Morning Sally!~

Hope all is well with you this morning.

Well, listening to you sounded like I was seeing myself in a mirror. It's been 1 1/2 months since I've recovered from the influenza along with a severe sinus infection. Since then, all I've been doing is coming home from work and immediately go to sleep. Around noon, I'm so tired and have to keep myself busy so I won't fall asleep. I can get pretty cranky when this happens because the weakness frustrates me. I seem to have to unrinate quite frequently and every time it seems like it's not enough. And I still feel like my bladder is full.

I started having unbalanced coordination two years ago off and on. I didn't think too much of it at the time. Last year it got worse being everday. I have to watch myself closely because I've hurt myself many times not knowing when it will happen next. It's embarrassing sometimes because it happens in front of people and there are either quick with concern or apprehensive to stay away. I don't like this because it makes me feel weak and not capable. I have always been a high-energetic strong person, always on the go. And now, I feel like another person. Sometimes I don't know who I am anymore.

I hope you get some answers and relief soon. As for me, I'm still waiting.

Take care,
Michelle
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#9 Sally

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Posted 01 November 2006 - 04:49 AM

thanks to all of you for your replies and info. I will follow up on every suggesttion. I did go to the urologist, and she didn't want a full bladder, just had me void and then did the test which is similar to an ultrasound, and said yur bladder is empty. Go Figure. But she did say something is going on as my urine showed blood and protein, which I am not thrilled about. Today I went for an ultrasound of the kidneys, will let you know what is happening, and again, thanks to all of you, Love, Sally

#10 janey

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Posted 01 November 2006 - 05:02 AM

Sally,
Sorry I'm late jumping in on your posting, but I've been out of town for a few days. The bumping into walls and always sleeping were very big symptoms during my first year. I was always tired and just wanted to sleep. I think the off balance and wobbling were due to the fatique. I slept late, took long afternoon naps then fell asleep after supper. Once I started on a treatment, both of those symptoms eventually went away.
But then about a month I was put on a new immunosuppresant and the fatigue and sleepiness came back along with urinary problems. I never felt like I needed to pee and when I finally did, it took forever and it wasn't very much at all. I had to give a urine sample and it took 10 minutes, then the nurse said "Is this all you can give me?" It turned out I did have a urinary tract infection which my rheumatologist said was probably due to the new drug. Needless to say, I'm not on that drug anymore and all those ugly symptoms are gone.
I hope you find out what's going on with you and that you get the proper treatment to give you some energy. Please keep us informed.
Big Hugs,
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#11 Sheryl

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Posted 01 November 2006 - 08:58 AM

Regarding the topic of fatigue. Seems we all have fatigue with this disease. But, do you have it so bad that when you get up after 8 hours sleep you try to read the sclero forum emails and you find yourself nodding off and jerking yourself awake. I have been fighting falling asleep for about an hour even now. So I get a pretzel or something to nibble on to stay awake. I will eventually take a nap because I won't be able to fight off the fatigue. I can take a morning nap and an afternoon or evening nap. Then, I sleep in the evening untill about 3 am and I am on my computer still nodding on and off until I go back to bed. I do this 2 or 3 days in a row then I get a couple days where I have no problems. I sometimes fight to stay awake while I am driving. Which I tend to do as little as possible when I am in a fatigued state. Is everyone having that extreme type of exhaustion? My doctor prescribed Atarax/Hydroxyzine for the severe rip roaring itchiness I have been suffering with for the past 4 years. I only take it every other nite because that makes me extreamly sleepy. It is suppose to wear off but maybe it isn't doing it quickly enough for me. Doctors, don't seen too worried about it. I hate losing so much of my day to fighting sleep or sleeping it away. Anyone with suggestions, I am all ears. Oh! I do take thyroid medicines but haven't had these problems in the 15 years I taken them. Sheryl
Strength and Warmth,
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#12 Beanpole

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Posted 01 November 2006 - 09:08 AM

Hi Sheryl!

I started having extreme exhaustion since being ill with the flu. Not sure what I'm going to do abotu it though...I'm half asleep now with another 1 1/2 to go until I get off work...I can see the bed now, it's calling me. Can't wait to get there.

Take care,
Michelle C. Hunter
ISN Book P.R. Coordinator for the U.S.
International Scleroderma Network