Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 Hi Sara, I am quite new to the group too. The doctors think I have had igan for the past 12 years. I have only just had a biospy and go back on the 18th for my results. I have found the group really informative and friendly. Heidi England -- another new member Hi all, I am a new member of this group. I have has IGAN for about 10 yrs now. I was diagnosed when I was in my second year of unversity. I currently see my nephrologist about once a year but my GP, who is my specialist's sister, follows me closely and has been better about dealing with symptoms. I am currently taking 20 mg prinivil and 12.5 mg hydroduril daily for blood pressure control and recently started synthroid .05mg as the standards recently changed for that. I have had very few symptoms. My original complaint that lead to diagnosis was fatigue and just generally feeling " off. " Initally blood work only showed an increased sed. rate and then surpirse, surprise there was gross protienuria and some hematuria found on routine urine test. I had a biopsy in Dec 1991 and was given the result Jan 2, 1992-lovely way to start the new year. I don't have my current results in gfront of me but I know that I currently spill less than 1 g protien/day and my renal function is >50%. I have been just reading messages for a few days and this group seems to be very supportive and informative. Do any of you know about elevated cholesterol levels related to IGAN? I also have a family history for that so I don't know if it the disease of me personally. Thanks Sara (Edmonton) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2002 Report Share Posted July 3, 2002 , I have been finding the fatigue the hardest thing to deal with. Because I look healthy and can do most anything my family and my partner seem to have a hard time with how much sleep I need. I recently started taking synthroid to see if it would make a difference as I was borderline for hypothyriodism also. I can't say there has been a vast improvement. As with my previous comment about cholseterol it is hard to know what is the diease and what is " just me. " My father has sleep apnea, resltess legs and ramdom leg moevements in his sleep so I wonder sometimes if the fatigue is sleep disorders I inheritated or the IGAN. I have not had much flank pain, more a vague ache under my ribs at the front, especially on the right side. I look forward to anything your neph has to say about this issue Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2002 Report Share Posted July 4, 2002 Hello Sara, I am one of the people who has been going on about how the fatigue is so debilitating too. I totally sympathise and like I'm trying to find out more about it. I need loads of sleep. Fatigue is accepted as a symptom for Lupus and yet they don't know the cause and like Lupus we have an autoimmune reaction going on in our bodies too.........anybody any ideas? Sally Re: another new member , I have been finding the fatigue the hardest thing to deal with. Because I look healthy and can do most anything my family and my partner seem to have a hard time with how much sleep I need. I recently started taking synthroid to see if it would make a difference as I was borderline for hypothyriodism also. I can't say there has been a vast improvement. As with my previous comment about cholseterol it is hard to know what is the diease and what is " just me. " My father has sleep apnea, resltess legs and ramdom leg moevements in his sleep so I wonder sometimes if the fatigue is sleep disorders I inheritated or the IGAN. I have not had much flank pain, more a vague ache under my ribs at the front, especially on the right side. I look forward to anything your neph has to say about this issue Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2002 Report Share Posted July 4, 2002 Hi Sara Hi Sally Rest assured (no pun intended), I will let you know what my Nephrologist and of course my fellow guinea pigs have to say about all this once the trials are over with which will be end August. I have been wondering about Lupus myself, but have not been tested, excuse my ignorance but I assume Lupus will be tested via blood test? The closest I have gotten to answers for the fatigue is that I could be suffering from Chronic Fatigue Syndrome, but my symptoms do not match any of the criteria really if you look it up, similar but vague, besides which I am reluctant to be given just another label to shut me up tee hee!!!! The fatigue for me personally has had a dreadful affect on my personal life, i.e. hobbies I can no longer pursue, social life, and even marital problems, but they are being addressed, I find I need a good 9 hours at night, and then a couple of hours in the afternoon most days, but now here is something interesting, on holiday in a different climate I felt completely different, no fatigue, no flank pain, no nothing. Both my Neph and GP say if ever their were a candidate for moving abroad to warmer parts particularly in winter when I am at my worst, I am it. Nice thought, but hardly practical eh!!!! Oh well rant over for today, keep smiling girls, we will get through this. Re: another new member , I have been finding the fatigue the hardest thing to deal with. Because I look healthy and can do most anything my family and my partner seem to have a hard time with how much sleep I need. I recently started taking synthroid to see if it would make a difference as I was borderline for hypothyriodism also. I can't say there has been a vast improvement. As with my previous comment about cholseterol it is hard to know what is the diease and what is " just me. " My father has sleep apnea, resltess legs and ramdom leg moevements in his sleep so I wonder sometimes if the fatigue is sleep disorders I inheritated or the IGAN. I have not had much flank pain, more a vague ache under my ribs at the front, especially on the right side. I look forward to anything your neph has to say about this issue Sara Quote Link to comment Share on other sites More sharing options...
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