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11-28-2009, 07:36 AM
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#1
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ICN Member
Join Date: Nov 2009
Posts: 3
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Not sure what's wrong with me?
Started a few years back that I need to pee constantly. Went to GP and had a UTI (doctor said guys don't usually get UTI) so sent me to urologist. Urologist did full battery of tests (cysto, ultrasound, x-ray, etc..) and can't find anything. He was baffled that I have to pee all day and never have to get up at night. Said try Elmiron and come back in six months. Six months later still the same so he says try it for 6 more months. Does nothing so I quit taking it.
Over the last year I've developed some other symptoms. They are as follows:
Insomnia
Cold Intolerance
Joint Pain
Constant Fatigue
Constant Upset Stomach
Enhanced Gag Reflex
From internet research those symptoms fit several conditions besides IC. Some include thyroid problems, lyme disease, and believe it or not GAD (Generalized Anxiety Disorder). Not sure where to go from here? Back to the family doctor or the urologist?
I'm open to suggestions.
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11-28-2009, 12:07 PM
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#2
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ICN Member
Join Date: Nov 2008
Posts: 98
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Hi there,
I'm not a doctor or anything but I would suggest seeing a rheumatologist for the fatigue and cold intolerance.. that doctor would be able to test you for lymes disease and fibromyalgia
The upset stomach could be from IBS or from a new food allergy.. a gastro. doctor or even your primary care doctor should be able to help you with a diagnosis
The insomnia may be from the worrying?
These are just some of my thoughts..
Have you tried any of the meds that help with the feeling of needing to go to the bathroom? i.e vesicare?
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11-28-2009, 03:19 PM
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#3
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ICN Staff
Join Date: Mar 2000
Location: Junction City, Oregon, USA
Posts: 26,114
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You might also want to see a different urologist. One thing you can do in the meantime is to give the IC diet a try to see if that helps.
Donna
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11-28-2009, 04:07 PM
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#4
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ICN Member
Join Date: Aug 2009
Posts: 138
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Another possibility
Hi,
It's good that you are trying to figure out what is wrong with you. We can all sympathize with that process. I think everyone had to take that frustrating path.
Another thing you might want to check out with the cold intolerance and fatigue is your Thyroid. Anyway, those were my symptoms before I got treated for Hypothyroidism.
Hang in there and don't give up--you'll figure it out!
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12-02-2009, 04:40 AM
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#5
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ICN Member
Join Date: Nov 2009
Posts: 3
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Having blood drawn today for thyroid tests. Also going to test for Lyme disease since I've had a potential tick bite a few years ago. I don't care what it is as long as I know and can work on treating it.
Nurse Practitioner I saw (best I have ever spoken too) says Raynaud's for the hands and feet coldness. He asked me more question about the baldder problems vs my urologist. IHe was very familiar with it and seemed to know more about it than my urologist did. Gonna do blood test tomorrow for other stuff and is gonna work with me on the potential IC. If nothing else I finally found someone who seems to actually care.
Last edited by CRM; 12-02-2009 at 08:14 AM.
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12-16-2009, 04:50 AM
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#6
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ICN Member
Join Date: Mar 2006
Posts: 16
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Got test results back:
TSH a little low .95
Vitamin D - low
Vitamin B12 - low
Platelet Count - low
Got a referral to a endocronologist to see if they can find anything? 
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12-16-2009, 06:43 AM
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#7
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ICN Member
Join Date: May 2001
Location: Eastern USA
Posts: 5,524
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Did they check some other thyroid related numbers besides the TSH?
__________________
Kim
Diagnosed August 2001
Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Lexapro (since 2003 for depression & anxiety, but also helps my IC)
Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA (They all helped, but I was able to discontinue them.)
My IC story: http://www.ic-network.com/patientstories/kim.html It's very outdated now. I've been virtually symptom free and able to eat & drink whatever I'd like for several years now.
*****************************
“We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl
“You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy
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12-16-2009, 06:46 AM
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#8
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ICN Member
Join Date: Dec 2009
Posts: 3
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Quote:
Originally Posted by CRM
Having blood drawn today for thyroid tests. Also going to test for Lyme disease since I've had a potential tick bite a few years ago. I don't care what it is as long as I know and can work on treating it.
Nurse Practitioner I saw (best I have ever spoken too) says Raynaud's for the hands and feet coldness. He asked me more question about the baldder problems vs my urologist. IHe was very familiar with it and seemed to know more about it than my urologist did. Gonna do blood test tomorrow for other stuff and is gonna work with me on the potential IC. If nothing else I finally found someone who seems to actually care.
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Just an FYI - if you suspect Lyme at all, don't rely on the WB or Elisa through a general lab such as Labcorp. They are very inaccurate and sometimes the diagnosis is symptom based only. It took me a couple years to find a good doctor who know where to send my specimens for testing (Igenex) which turned out hugely positive, even according to CDC standards, when Labcorp only showed one positive band. Here's some general information (I have chronic Lyme):
http://www.ilads.org/lyme_disease/about_lyme.html
I hope you find answers! It's frustrating to have so many off symptoms and never know what is wrong. I know low vitamin D levels can cause joint pain and many other issues. Also B12. Hopefully you'll get it all straightened out!
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