Kidney Dysfunction in Lupus

Top 3. Jan 23, 2002 1:39 PM

» lifewiththetwins - Re: Re: Find A Doctor who You Can Trust

In response to message posted by scottishgirl:

Hi Karyn,
In regards to finding a new doctor that is just not possible in some areas, such as mine. If you are seeing a family doctor you can't even get on a waiting list for another doctor. It took us two years to find one who would take me on. Also when there is a doctor shortage new doctors will not accept new patients who have serious illnesses because they take up too much time. When you are not happy with your family doctor the advice you receive is to go to the nearest hospital. Of course going to the hospital is useless because the first question you are asked there is "who is your family doctor" and then you are told you must go through him or her. It is an endless vicious cycle. And to add insult to injury if you request to see a specialist (as I did) you can be told NO by your doctor and there is nothing you can do about this because you can only see a specialist through your family doctor. (mine said NO several times. his reasoning was that there wasn't enough wrong with me yet) Anyway as must be evident to you, I am frustrated. I hope this new doctor turns out well for us. At least I will have some documented proof that I have MS and hopefully he or the neurologist will send me to the kidney specialist and hopefully a nutritionist to help me plan my diet.
I will try to let you know how the diet works or doesn't work. I am really interested in this method of health management. I think it is highly under estimated. Also I know what you mean about the vegan diet being very hard when you have a family. I cook most of my family's food from scratch, including snacks, bread, etc. My health is making this very difficult and I barely have time for anything else. If I can do just one thing in a day I make sure it is cooking. Everything else comes second. So far I am managing but it is VERY hard. My goal each day is basically to make to the end of the day. I am looking at ways to improve my quality of life. (I know you must be expert at this by now)
Take care
Lori

-- posted by lifewiththetwins

Top 4. Jan 23, 2002 5:59 PM

» micklady - Re: Re: Re: Find A Doctor who You Can Trust

In response to message posted by lifewiththetwins:

Hello Lori, my heavens you have your hands full! I will pray for you and hope that you can get some RESPECT from this Doc. We know our bodies , why is that so difficult for the Doc's to listen to us? Ah quality of life! We are the best at creativity! Life does change with these blasted diseases...and we learn to adapt and creat a GOOD life for ourselves. I am so very GLAD I have all of you to help me with this body! good luck and hang in there!

-- posted by micklady

Top 5. Jan 29, 2002 10:25 AM

» lifewiththetwins - Re: Re: Re: Re: Find A Doctor who You Can Trust

In response to message posted by micklady:

Hello
Well, I thank you for your note. I hope I get some RESPECT from the new doctor too!

We had some good news. We checked our insurance and it looks like my wheelchair will be covered completely. I have been worried about the expense. I feel pretty good about using a wheel chair, although it took me awhile to even consider it. It became too difficult for me to venture out even to shop about a year ago. I can walk but the fatigue is tough. If someone would have told me about fatigue and MS before I would have thought very differently about the meaning of the word. I went for a walk yesterday because we are having some unseasonably warm weather right now. I enjoyed it immensely. I used my cane for support and walked at a snail's pace, but at least I can do that much. If I try to pick up my pace my airways get restricted. I passed this nice old couple who I often see walking their dog. It felt a little weird to be the more feeble, but that's life sometimes.

Last night I dreamt I was in a wheelchair and I was just zooming along and taking corners like a pro. It was a good dream and I woke up happy. I truly am not looking at this transition as a set back but more of positive thing. It will give me the ability to spend the day with my family when we spend the day at the flea market or walk by the lake. (Hiking still poses a problem and I will miss that terribly)
Anyway, I am off to surf the net!
Lori

-- posted by lifewiththetwins

Top 6. Feb 6, 2002 1:24 PM

» lifewiththetwins - More Doctors

The saga continues. Previously I told you that my MRI showed that I had MS. Well, apparently it did not. My family doctor told my husband a few weeks ago that MS showed in the MRI that the neurologist had ordered. He said that "it is MS but it isn't" and told my husband that the neurologist would probably put me on preventative meds. When I had seen the neurologist he had told me that if MS appeared in the MRI it would be considered MS. However when I went to see him for the follow up he told me that nothing showed up on the MRI and that he doesn't know why my family doctor told me it did. He also said that he retested me for lupus and that all of those tests came back negative as well. So not only did I have the carpet pulled out from under me but I am back to square one. I was so devastated that I felt like I could not go on living for the last two days. Fortunately family and friends have been there for me and I am starting to feel like myself again. I really thought this was it. I thought I would start getting some kind of treatment and my life could start moving again. I thought at least I would be able to slow the progression of this illness down and learn what I needed to cope.
I had even started to question my sanity over the last two days. I began thinking maybe my family doctor's believe that I am just bored was true. However, I keep waking up with the same symptoms. If it were in my head they should disappear. Shouldn't they?

I am going to see my old psychiatrist this week to ask him how possible it is for this to all be related to depression. I understand about chemical imbalances and clinical depression but it seems so unlikely to me that all of these problems can be caused by depression. I am depressed now but I think the illness came first not the depression.

The neurologist said that he would send me to St. Mike's for further MS testing but I declined for now. He also offered to prescribe medication to try to relieve the symptoms but I told him I have been down that road for the last 20 years and it truly doesn't seem helpful. I think treating the symptoms has been what has gotten me in this dilemma in the first place. I trust his reading of the MRI over my family doctor's because my family doctor has shown consistently poor judgement in the past.
Anyway, I have an appointment with a new family doctor in March and I can only hope he will be more helpful.
Bye for now
Lori

-- posted by lifewiththetwins

Top 7. Feb 6, 2002 7:43 PM

» Rosee - Re: More Doctors

In response to message posted by lifewiththetwins:
Hi Lori! Just want you to know I am thinking about you and I sure hope you find some answer real soon. Sending you some positive thoughts and energy. Hugs, Marilynn

-- posted by Rosee

Top 8. Dec 17, 2003 1:45 AM

» SPARKO - Kidney Problems??????

I have had some problems in the past with my kidneys. Like, feeling the need to urinate but after getting to the toilet I hardly went. Blood in the urine, the feeling of a swelled stomach and irregular bowel movements and consistent urine decrease. Recently, I have experienced the stomach swollen feeling and the decreased notification time I receive when my kidneys need flushed. I also seem to smell a oder of urine, like my kidney has not been flushed in a very long while. What would you recommend to help me. I am in very bad pain!

-- posted by SPARKO

Top 9. Dec 17, 2003 7:08 AM

» rbutterflly02 - Re: Kidney Problems??????

Hi there,

Knowing from personal experience it sounds to me like you have a Urinary tract infection. You definately want to go to the doctor asap and get that checked out to make sure the infection hasnt gone to your kidneys. I had a bad UTI before that had me crying and doubled over in pain. I felt I had to pee every five seconds and then hardly anything would come out and I also had traces of blood in my urine. The doctor I saw prescribed two medications (i cant remember what they were) one of them turns your pee dark orange. I hope everything turns out OK. And let us know what the doctor says.

Shannon

-- posted by rbutterflly02

Top 10. Dec 17, 2003 12:25 PM

» tayhera - Re: More Doctors

In response to message posted by lifewiththetwins:

You sweet thing! Keep your chin up, and if I've learned anything from my experience, and growing up with my mother's illnesses, it's to through the docor's answers back in their face. They tell you No, you can't go see a specialist, tell them No, you can't do what I need you to do, so send me to someone who can. Be the squeaky wheel, sweety. You have no idea how many times my mother's transcript has been noted "at patience insistence," and then the docs have gone back and corrected their mistake . . . I don't remember which discussion I posted it in, but the story of how I got here (on earth) and that it was basically because my mother said No until she found the right doctor.
Keep your faith . . . what doesn't kill us, only makes us stronger.
Also, have you looked into getting a Rascal? The little motorized scooter wheel chair thingy. I know a couple of people that have them (my grandfather in law and a good family friend) and I know that sometimes they will work with you insurance, and if that doesn't work, they may still work with you on payments, discounts or even donateing the unit for free. I don't know a telephone number, but your local pharmacy would probably have some info.
ttyl
Tay

-- posted by tayhera

Top 11. Jan 20, 2005 9:17 PM

» nakeyia - fluid in abdomen

I have a question for anyone that may have experienced this problem. I have lupus, and at the moment I am having problems with my kidneys. My symptoms are swelling everywhere, and a lot of fluid in my abdomen. I have been put on a lot of medications, diuretics being one of them and I have also been put on cytoxin. I have tried cyclosporine also. None of these seem to be working to help my kidneys. The diuretic took a lot of the fluid off my body, but my abdomen is still very swollen, and I can't seem to get rid of it. This has started to affect my breathing, and is starting to cause pain in my lower back. I have also developed high blood pressure, where as before it was very low. If anyone has any suggestions please reply.

-- posted by nakeyia