I have Autoimmune Hepatitis, Lupus, Sjogrens Syndrome, Menieres Disease, Fibromyalgia, Diabetes II for which I recently started Metformin, and stomach problems.
I was diagnosed with AIH in 2001 Lupus(self diagnosed) in 2004. Since being given to a rheumatologist who investigated nothing in all that time, I fought for, and got a referral to an eminent specialist in Lupus, in May. Her four page report, blood tests and dnew diagnoses (SS, Fibro) astonished me and showed the depth of the Rheumy's neglect of me. Result, you would think. No. I have subsequently had to fight for investigation of anaemia, ferritin level low, red blood cells bit large, haem at or below base level, which has still not happened and for investigation into stomach problems. Fullness, slow emptying of stomach and transit, bloating, nausea. I also have peripheral neuropathy. I can not stand in darkness, or trying to put on my knickers standing up, tinnitus - bad, all Men Disease symptoms. In taking my hubby with me to my last gastro apt the gastro decided on a CT scan. She raised the possibility of Coeliacs. Since the CT I have gone gluten free, 9/9/16, which has greatly relieved my bloating but not cured it. My blood test was ANA negative for coeliac, but that is not relevent to me now.
Almost a month later I received a letter today from the gastro which I have been holding my breath for.
It contains four, yes, four lines. No ref to Coeliacs. Nothing serious to report! Some diverticular disease, ( treatment? extent? life change-diet?) and a repeat ultra sound on known cyst on an ovary recommended.
I have changed GP within surgery many times after being disrespected, ignored, patronised, laughed at during my attempts to get the May report adequately investigated. My research on subjects been referred to as "Googling".
I am truly in despair. I now think I may have PA, given all my symptoms and the unutterable overlying tiredness which robs me of any energy at all. I am used to good old fatigue. Fatigue, I laugh at you! I had fatigue from 2001 and could manage my meagre resources. Since february I am flat. Fat with bloating, less since going gf but I feel so ill. Oh and Im veggie.
Recently, I went to the latest GP and begged for a short course of steroids because, I just wanted to go asleep and not wake up. It give me brief respite from the overbearing tiredness but since it has left my system I am bereft. Also, most notably, I am so damn irritated with everything and anyone. I nearly threw my darling, beloved ... ipad across the room the other day. Now that is serious.
What should I do? I have been reading here and have read links etc and started taking mithyl B12 but have since realised, having been on PPI for years, that that is foolish and have stopped. In the good report, my B12 was 264 but when asked useless Rheumy for a boost, she flat refused saying it was in range.
Sorry this is so long but I once thought I had fought and succeeded only to have doors slammed in my face again. Thought Id found a gastro who 'got me' only to be short changed, and no follow up apt to review results.
Should I get private IF blood test? Should I get a private consult? Who shd it be with?Is there another test I can get, given my recent attempts at supplement? Or should I just get the injections off the internet, add the extra vits advised on here and treat myself to see if it will relieve all, most, some of my symptoms, especially this godawful tiredness, given patience and awareness of side effects etc?
Please help. I will answer any questions. I have many symptoms but as you see some cross over, even though I have meds for each AI condition. One thing I didnt say. I was driven to Lupus specialist because all I read led me to believe it affects so many things IT was cause of my ills this year, But in May, my Lupus was quiet. I have Azathioprine for the AIHep, but it is also the drug of choice for most AI conditions. How come I keep getting more???
Sorry, again, off PA topic. What do you think guys? What would you do?
All replies deeply appreciated. Been kicked too often now, running out of all oomph.
Many thanks for reading all this, you stars, your eyes must be tired !
Ps add the fog memory concentration probs plus bed, no sleep / sleep 14hrs awake no diff to going to bed/ depression, I think/restless leg syndrome/no appetite since Feb, only eat bits as hubby insists.