Waiting for diagnosis. Information.

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Hi Everybody, I haven't been diagnosed yet as the medical guys are still running tests on me. At the beginning of this year I started feeling numbness in my toes and fingers. Since I am type 2 diabetic my GP said it may be related and will send me to a neurologist if it worsens. He was surprised as my hba1c and glucose levels are well under control with diet.

4 months later I went back to my GP and said I think they are getting worse. Not painful, just a disconcerting numbness. He had no hesitation referring me to a neurologist. The neurologist was booked up and I had to wait a month to see him. He ordered a lot of blood tests and made an appointment to see him one month later for a nerve conduction study and go over the blood test results.

The nerve conduction study didn't show any major damage and probably only confined to the tiny nerve ends. He too thought also that diabetes may be the reason. He explained that although the sugar is well controlled the damage may have begun prior to diagnosis. He asked me to come and see him again in November and wanted a follow up blood test. He was concerned that my kidney function test was a bit elevated. I informed him that I've been taking Voltaren every day for my sore knee. He told me to stop as this may be the cause of the kidney reading.

I waited two weeks and got the follow up tests done. He phoned me and told me that kidney function has returned to normal and that all other tests look ok except for maybe one odd reading with an antibody.

He called me the next day and said that he wanted me to see an immunologist for an opinion on my c-anca and PR3 readings. These were 20 and 5.1 respectively. I asked him what were they looking for and he told me he just wants to test for possible GPA or sclerosing cholangitis.

I can't get into to see the immunologist until end of november. I looked up the two diseases and naturally by bum cheeks clenched up a bit. I would just like to ask anyone here if the think that these two readings are high, low, borderline or even if it is possible to have the antibodies and have nothing wrong with me. The waiting is doing my head in.

Thank you and I wish everyone here good luck with what looks to be an awful thing to manage.


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  • Posted

    It's hard to tell based on those numbers because it just depends on how they are measured by the lab.   Do you have a copy of your labs to compare with what is the normal range?   For instance, my C-anca was 1:320 at dx.  I was told that it was 8x what is considered normal.  I was a sick girl.  A year later, my levels are still slightly elevated but are coming down and I will hopefully be in "clinical remission" soon.  My advice...don't read too much.  I was in the hospital 31 days, on the ventilator twice, developed a DVT and almost lost my leg,  received 6 units of blood, 4 of plasma, plasmapharesis, and large doses of Prednisone and Rituxin.  I was in critical condition.  If effected my lungs... they filled with blood.  I tell you all this to say that you are very fortunate that you have a diligent doctor that tested you BEFORE you have an event.  And, let's hope you don't even have it. I have vacationed this summer in high altitudes and hiked without issues! Thankful.  So...if you do have SGA, it's treatable and it won't effect your life too much, if you won't let it.  Hope this helps.  Maybe there are others that know more about those numbers you reported.  I wish you the best!!

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  • Posted

    Hi, although the levels may be an indication of GPA they are not a reliable hard diagnostic as they can be high in people without GPA.

    GPA can be a grumbly condition that can be well managed as well as a horror story which you might read more frequently. My GPA is managed and grumbly attacking my airways, ears and causing periodic acute pain in my feet. However this hasn't caused any changes to my lifestyle or work, and instead of GP care I now have 3 top consultants working hard as and when GPA attacks happen, and ongoing monitoring in between. I am happy to share though that I was freaked out by all that I read about GPA and the meds, but the reality has been quite different. Finally remember there are treatment options so don't just assume what is offered first (probably very heavy meds) is the only treatment path, discuss with a consultant the options. 

    And remember, GPA isn't always horrendous. Good luck.

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  • Posted

    Thank you so much for your replies. I guess it just means wait and see what the immunologist says. At least I don't have any of the bad symptoms that many of you have had. No sinus or chest problem, kidneys OK and not fatigued. Only the numb toes and fingers which may be something else. I don't know much about this and less about c-anca and PR3. Stuff I read on the web is too complicated. Maybe my PR3 has always been this way, I don't know as it's never been measured before. Hope you all do well in your journeys.

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