Rachel Cox Posted April 22, 2013 Report Share Posted April 22, 2013 feeling really frustrated and totally glum.Just had a call from my very lovely doctor, who against the odds, sent my bloods all the way from NZ to the Mayo. He printed out the result form for me, but told me I had to wait to hear back from his immunologist colleague to see if they were useful results. I had a result for GAD65 and the results form had a blurb about that. But apparently, my results are not useful. The immunologist said they are negative. I am 0.04 nmo/L off 'clinical significance' and therefore don't qualify for IVIG. He said he understands my frustration but that I can take heart in that my progression is slow compared to some. As a geriatric specialist I have no doubt he sees faster disease progression than mine. But I am 38 and I have a GOOD LIFE I want to lead! I want to find out what is going on! I am so frustrated. I can eat and digest only because of pills. I can pee and poop only because of pills. In the background, the nerve damage is still occuring and one day, those pills won't work anymore. He has explained that to me at previous appointments. Now, he's discharging me into the care of someone new and I am so worried that they won't care, about me, as a person. I am worried because in the last four years I have seen a significant decline in my ability to function normally, I don't think I can handle drifting along, watching my own decline and doing nothing. Surely IVIG is worth trying? Why won't they? I would try anything and everything. That makes me an annoying patient! Bugger it, I don't want to be a patient of any kind!! I don't usually cry. Tonight I have cried. I'm sorry to vent but I know if anyone understands this it is you guys and I feel very alone. This is not my beautiful life. Quote Link to comment Share on other sites More sharing options...
issie Posted April 22, 2013 Report Share Posted April 22, 2013 Rachael,There are ways to address your autoimmune issues without IVIG. I have very low IGG levels and chose not to do it. I have changed my diet and also using herbals and some meds to address the immune issues. I can tell that things are getting better. This is a slow way to change the function of your body - but, it hopefully, will be a lasting change that will be good for a long time. One way to address the GAD65 problem is with diet. Hang In There! We all have periods of the way you feel. It's perfectly normal and something that one must go through with a chronic illness. Hopefully, we will find more answers soon. I hope your new doctor will continue the search for you and you will get more answers and a direction to go.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 22, 2013 Report Share Posted April 22, 2013 sees faster disease progression than mineIm confused - if the results they are saying arent 'clinically significant' how do they know what disease you have? many arent progressive at all. Quote Link to comment Share on other sites More sharing options...
anna Posted April 22, 2013 Report Share Posted April 22, 2013 Rachel I think you are at the stage that you need to be emailing any Dr.'s that might have a clue what is going on with you and seeing if they can offer any advice!Do your Dr.'s believe your Pandysautonomia is the type that is self limiting?! That might be why they do not want to go with the IVIG therapy! Quote Link to comment Share on other sites More sharing options...
corina Posted April 22, 2013 Report Share Posted April 22, 2013 Rachel, I'm so sorry. I know how you feel and wanted to let you know. Like Issie said we all get periods like this. When I'm in such a period I always remember that line from a song: "nobody said it was easy" and for some reason it gives me the strength to get myself together and fight. For all we have is just one life and I'm determined to make the most of it. Thinking of you Quote Link to comment Share on other sites More sharing options...
Rachel Cox Posted April 22, 2013 Author Report Share Posted April 22, 2013 Thank you. Issie, I am working on all the avenues I can work on myself, in addition to the meds. My diet has changed drastically compared to before my diagnosis. I am taking supplements but I am wary about what to take and slow to start new things without lots of investigations. Rama and Anna, my neurologist said my pandysautonomia was progressive and not autoimmune, my specialist thinks it is and we haven't found the cause yet (but he's the one moving on). So I guess we will see what comes next. Tonight I am just tired from the journey and not very optimistic. Tomorrow will bring a new day and a new opportunity to see things differently. Corina, you are right, this IS just part of it, life is worth being grateful for and I would pay far more than this torture for time with my husband and children. It's worth it, just tiring and disheartening some days.You guys are lovely. Ta. Quote Link to comment Share on other sites More sharing options...
badhbt Posted April 23, 2013 Report Share Posted April 23, 2013 Hope today is a better day for you. Just know you are not alone, there are several of us that are staring at the same drawing board...haha Quote Link to comment Share on other sites More sharing options...
anna Posted April 24, 2013 Report Share Posted April 24, 2013 Gentle HUGS Rachel Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.