Newly diagnosed
Posted , 4 users are following.
Hi I recently have been going to these issues so that I'm reading here on the post it started with a rash due to some antibiotics and they continue to give me the antibiotics after rash appeared leading to kidney failure I have been to a rheumatologist I have been to a nephrologist and I have tons of blood work taken as of right now the only thing I can say is that I have really bad GI issues and my kidneys are only functioning at 30% and no one still has a clue as to what is wrong although they have hinted to the leukocytoclastic vasculitis I'm wondering if anyone has experienced anything close to what I'm experiencing I noticed the post have been over a year ago so I'm wondering if anyone is experiencing this now and if there are any ideas in the direction I should go I also noticed some difficulty breathing so I'm not sure if anyone's able to comment on that either but if so your advice ice and or suggestions would be much appreciated thank you
1 like, 15 replies
margaret22116 taramp
Posted
I have a form of vasculitis diagnosed 12 years ago.
I am not sure where you are pr even if you are in the UK but I see an amazing specialist at the renal clinic in Cambridge David Jayne. I am waiting to see a nephrologist because of something going on with kidney area....not fully sure what yet.
I hope you get answers and treatment which works for you soon.
Will watch developments to see how you go x
michelle43915 taramp
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I don't know what country you are in. If you are in UK please contact "Vasculitis UK" site, they have a free help line, think its 24 hours, believe me they will help advise on hospitals etc. They are 100% trustworthy. Helped me years ago. If in USA/Canada they too have a site. If abroad you can email the Vasculitis UK site and they will direct to hopefull to a site in your country.
Once you find out what type you have join a support group, I have found this invaluable for support, drugs, reactions etc.
I have Churg Strauss Syndrome/EPGA and yes, we too have had similar if not same symptoms.
Good Luck.
taramp michelle43915
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Thank you so much for your prompt response I'm not sure as of what kind yet I will be going to Duke University Hospital located in South Carolina in the USA and I'm hoping they'll be able to give me a more concrete diagnosis then at this point in time I've seen a nephrologist a rheumatologist and gastroenterologist and I am now going to be going to an allergist as well as a lung specialist and heart specialist
michelle43915 taramp
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MattC13 taramp
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Hi I also have terrible GI symptoms with bad headaches, pulsatile tinnitus, ear pain, ear popping, sinus pressure, weight loss (30 lbs), weird symptoms in my hands, and general fatigue throughouty body. Let me know how your diagnosis process goes. I am unfortunately still in the procesof being diagnosed even though I strongly believe I have vasculitis. My doctors won't consider it at the moment because my blood work has been normal (other then elevated liver enzymes). Wish you the best and please keep me updated.
margaret22116 MattC13
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MattC13 margaret22116
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Hi margaret. What type of vasculitis do you have? And you experience bad digestive issues as well? I am worried my doctors won't catch it in time they are not very well informed about vasculitis here in the US. They keep telling me I have fibromyalgia but I know I don't have that because my symptoms are getting worse. Especially my GI and head symptoms. I have had to beg them just to get an angiogram and they still wont give me one just because my blood work is normal (other than liver enzymes).
margaret22116 MattC13
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I have Behcet's which is pretty specific but there are several types.
margaret22116
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michelle43915 MattC13
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michelle43915 taramp
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Do what Margaret says get on to the Vasculitis Foundation please. I have top specialist in the UK. He has let me down badly. I have had bowel problems etc for 14 months. I got a scan the other day, its damning. I now have fibrosis of the lungs and yesterday bringing up blood, plus my bowel near the pancreas is so inflamed and damaged they have no idea if it can be repaired. My main thing is to get this damn disease under control. My consultant left me like this, 14 months telling him I think its the CSS, but no, he sent me nowhere. So please, please don't leave it, we all may be wrong but you are so ill and vasculitis unmedicated/diagnosed kills.
MattC13 michelle43915
Posted
Hi Michelle I am sorry that you have been let down by your doctor. They can be very frustrating to deal with. I believe we as patients should have the ability to pay for a test that a doctor will not order if we think it is best for us. It is horrible that I am suffering and they won't do anything for me. Doctors have been stuck on fibromyalgia with me for several months because my bloodwork has been pretty normal, and they refuse to run anything else even though they cannot explain what is causing my bowel and head issues. No i have not been on steroids for a couple monthe now, but i have been on high dose Tumeric and omega 3 supplements. Have they considered surgery on your bowel yet? I also read that CSS vasculitis is almost always accompanied with asma, is that right? I do not experience lung issues as far as I know. I have suspected PAN vasculitis myself. How were you finally diagnosed? Wish you the best.
margaret22116 michelle43915
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michelle43915 margaret22116
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michelle43915 MattC13
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Thank you |Matt. So worried about you. Yes I have Asthma, it started with my nose, nasal drip. Took 18 months and paying private to get that diagnosis, we have NHS in UK, but that too let me down. After 18 months I took my mum's Asthma meds on my 50th Birthday, first time I managed to sleep and breathe. Then I had a year going into hospital with a gut attack every 2/3 weeks, spending from 5 to 14 days in hospital, nearly died twice. I was desperate I emailed an allergist I had seen in London, she immediately said I have CSS. She was not paid for this or on the NHS, she took all the doctors details I had seen and wrote to them and got me an appointment for a specialist in Vasculitis. Diagnosis is hard, I was told it mainly goes on symptoms. Look at me, my Consultant said I would not get any worse, that all my bowel, breathing, sweating 24/7 was Post Menopausal etc, etc. Wrong! The CSS is killing my organs. Luckily I have this Registrar Rheumatologist at the local hospital who took a simple CT Scan to find out what is wrong. Have you have an MRI/CT Scan etc? This will show up any inflamation that is most probably a form of Vasculitis.
I have so many friends/fellow suffers with Fibro it is caused by our treatment, Chemo, steriods etc. I am only a layman but really seems like Vasculitis, not Fibro. I have never looked Fibro up as I have similar pain etc due to the damage from Vasculitis. You really, really need to get on either to Vasculitis organisation in USA or on FB site UK one. They have really good people on there and it is a closed group.
Nothing can be done for me until my local doctor can get permission from my Consultant. He plans to give me some chemo that I have not had before, it will give me Renal Cancer, but he will keep an eye on me and hopefully catch it before it takes hold. He said its a timebomb, the CSS will kill me anyway. Cannot operate or do anything until they get my CSS under control, because its strangling my organs.
Oh I know its so hard but you have to keep trying doctors etc. It may well be fibro, I don't know enough about fibro, but from what you say none of my friends etc have just fibro, they have vasculitis with similar to yours.
Yes Tumeric good, I used to put it loads of stuff, but for my CSS its bad.
I have a few friends who have 6 different types of Vasculitis plus Fibro. One in hospital now, fighting for some kind of treatment. I wish I had the answer for you.