Subject:  Re: Symptoms of Polycystic Kidney Disease |
Author:
Shelley
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Date Posted: 06:52:03 01/21/04 Wed
In reply to:
Marie McMillan
's message, "Symptoms of Polycystic Kidney Disease" on 10:53:45 01/19/04 Mon
>Hi, my name is Marie and I was diagnosed with PKD when
>I was 18. I didn't have any symptoms until I was 21
>when I had been having headaches for a while and when
>my blood pressure was checked it was high. I was put
>on medication and led a normal life. I continued to
>have headaches but nothing major. As the years wen on
>my blood pressure increased and so did the medication.
> After I had my third child when I was 29 my blood
>pressure would not come down so the medication was
>increased yet again. I am now on atennelol 100mg
>daily, amplodopine 10mg daily and captopril 100mg
>daily.
>
>I am now 33 and have been having constant headaches, I
>suffer from chronic fatigue and I am continually
>having back pain. I take 8 x 500mg tramadol for the
>pain.
>
>My doctors have told me that my kidney function is
>normal and that my blood pressure is well controlled
>with medication and more or less have told me that I
>should not have these symptoms and that I must be
>depressed. I have explained that I was not depressed
>as I have 3 young children that I want to do things
>with and I want to get up in the morning. I feel
>slightly depressed now as the doctor doesn't listen to
>me and my life has totally changed, I have been unable
>to go to my work for the past 20 months. I have had
>to apply for ill health retirement but the criteria is
>very strict.
>
>I am looking for anyone out there who might be able to
>help me. I need people with the same symptoms as
>myself to write to me in order that I can take this to
>my specialist. I should also note that my father and
>grandfather both died from the disease aged 38 years.
>I was very young but my mum has told me that my father
>suffered from chronic fatigue but they were unaware
>that he had PKD. When I was at my work, I would come
>home in a different pair of shoes as my feet and legs
>would be so badly swollen. I have said to the
>specialist how can these symptoms be in my mind.
>
>Anyway if there is anyone out there who can help me I
>would greatly appreciate it.
I don't have all the symptoms you have, but some of them. I have lower back pain often due to my kidneys becoming larger. When I mentioned having lower back pain to my specialist she barely acknowledged it so when I went to my GP I told her I was having pain and she gave me a mild pain reliever and it has helped when I need it. I have some headaches and my blood pressure was a little high, but well controlled with medication. I also am tired all the time and I have finally been diagnosed with anemia and now give my self an injection once a week and it has helped a lot. Is it possible for you to find another specialist in your area? That is what I did a few years ago after my Mother went on dialysis at my former doctors office. I got to see what they really were like....they also let my kidney function get really low and never told me what it was. When I went to the new doctors they were very upfront and honest when asked what was going on. I am currently waiting to have my visit with the tranplant team and to get my donors tested which I hope happens rather soon since I haven't been feeling as well as I would like.
I wish you the best trying to get help with your health. There is nothing worse than feeling bad and not getting any help.
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