Hello everyone. I hope everyone's been hanging in there. I haven't been feeling very good lately. I have all the regular PA symptoms and the B12 has helped considerably. But there's still something that's just not right. And I've been nagging at my doctor's to please help me and finally I got an appointment with a pulmonary doctor actually. And he ran a bunch of blood test that I've never had before. And something has come up that is very rare. And I was wondering if anybody else here has it.ncbi.nlm.nih.gov/books/NBK5...
I have never heard of this before but the symptoms are:
Symptoms of vasculitis include fatigue, muscle pain, fever, cough, hemoptysis, abdominal pain, blood in urine or weakness, and numbness in hands or feet. Treatment for vasculitis includes using steroids along with other medication the suppress the immune system, such as cyclophosphamide or rituximab.
I am not coughing up blood like one of the symptoms. But I cough a lot, very thick clear mucus. In my nose in my throat in my chest and in my eyes as well, I get a thick coating over my eye that makes me keep wanting to wipe my eyes to see clearly.
My body aches all over. My feet hurts so bad and are numb and tingly just like with PA. But this has overlapping symptoms. I will post a couple of blood test results just in case anybody knows what it means. Thanks so much for any information.
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EllaNore
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Sorry to hear of your latest results but at least you have answer's for your ongoing symptom's. Has treatment commenced or are you still under further investigation ? I was put on hyroxycloroquine to suppress my immune system - if offered try and get Zentiva or Black Rock brand else they can seriously upset the bowel.
I have heard of the illness ( only because I was Googling vasculitis ) and stumbled across it, I can definetely relate to the painful feet. My Dr recently brought a doppler scanner out and diagnosed neuropathy and raynauds. I had gentic testing for the aire gene but waiting results.
Maybe you can get a referal to opthalmology for your eyes. I suffer with Sjogrens and prescribed both drops and gels for my eye's, might be worth while getting a referal. ( Try not to rub them )
Thanks JillyMo. I am glad the docs finally got out to your place to update your medical history and diagnosis etc. I hope they have helped.
This is all new and now a weekend, so I have nothing but what I have researched. But I feel like maybe, I HOPE, this could help me a bit more. Yes, I was already diagnosed with idiopathic neuropathy. Some docs have called it peripheral Neuropathy. It is debilitating. whatever it is! But this also causes numbness and pain so perhaps the pain would lessen if they treat whatever this is. 🤞
Thank you, I will try to ask for Zentiva or Blackrock like you suggest. I don't know if that will be my treatment or what if any there will be.
It is so hard not to rub my eyes. I used to get blisters on the whites of my eyes. The entire white area would puff up but the colored area would stay flat/attached in the center and the rest would puff up like a pillow or blister. It would go down in a matter of hours but it was quite strange and it would itch every badly. Now i have a slimy film, it is impossible not to wipe it away so I can see clearly. I will wait to see what this week holds for me. I was just wondering if anyone else had this and if it is something that PA people just get.
Thanks again Jillymo. Good luck with your test results, wishing for the best 🤞🦋
I can only smile at the 'best of luck with test results' they were carried out on the 16th of last month and as yet the results are not back !
What your suffering with your eyes sounds awful, when you have got your head around the new diagnosis please ask to be refered to the opthalmology dept.
I cant say I have heard of ANCA mentioned on here and I suspect you have already googled.
Yet another autoimmune condition to contend with. 😘
Thanks Jillymo. Something else I have to research and learn about. Uggg! Yes this is just early stages of blood tests I've never even heard of. I don't even know what this really all points to. ANCA was just one of the tests. I don't know exactly why they ran it. It makes me wonder what I might have said that made him think of running this particular test. He ran a lot of blood work I have never heard of.
I am so surprised that your test results aren't in. Gosh, why can't the UK get their test results back quicker? Wth? 🌷
I have to finish reading that because I actually found that article as well. Because it said anemia. I was trying to link PA with it. However, my doctors don't think I've ever been anemic. And I keep showing my test results to them and asking them and they said yes it's a little low but it's not low enough . My RBCs were 407 five weeks ago and the low range is 421. From my particular lab. Now my RBC's as of last week were 433. So they refuse to admit that I've been anemic. But all these tests this New doctor ran are different from anything I've ever had and they say differently about my anemia. And they definitely point out there's something wrong with me. I think when I told him that my legs shake and want to give out if I bend forward, I think that was one of the things that made him write some notes. He just listened to me so well and he ran tests that were very productive in my opinion. Not the same old tests every time.
So far I have to say I'm impressed with this young doctor. He was very respectful. He insured me that he was going to get to the bottom of this. And he was going to take care of me. I liked him.
I dont think I have ever seen a pulonary Dr and my heamatologist seems to be doing very little to help me. She tells me she is just an antigoagulist! They questioned pulmonary issues when I suffered my heart failure. I think it disgraceful that my results are not back but hey ho this is the uk we are talking about.
I'm not even able to get through to my surgery. Even if I ring dead on 8am you get a recorded message saying the que is full please ring at 12pm. If I ring at 12pm I get the same message!
I am so pleased this consultant is looking after you and you feel comfortable with him. It paid off being seen by someone new, now lets see what else unfolds. I just hope they can make you more comfortable with regard to the awful painful symptoms.
It's a disgrace the way they've treated you Jillymo. With your heart problems... I don't understand why they haven't sent you to a pulmonary specialist. And to be honest I'm kind of surprised they're sending me to the specialists. Because I don't have good insurance and they deny me a lot, like they won't let me see another hematologist. Which is just fine with me. I've seen five of them and every single one of them said that I was going to OD on B12. Lololol. so I can't go see a doctor who says those things to me. I'm very sorry that they haven't given you your test results. If they would just put them online instantly for the doctors and for the patients at the same time this wouldn't be a problem. The lab is the one who reports the results aren't they? I wonder if you could call the lab and ask them what your results were.
You're very strong woman Jill. I know it doesn't really help to hear that because we get tired of having to be strong. Hang in there.
They surgery were going to email the results to me as the online services are down, no explanation given as to why.
To add insult to injury my gastro appt due this Wednesday has been canceled because of Drs strikes ! I have waited a year and a half for that appointment. 🤬
It seems two steps forward a dozen back and getting know where fast. I'm hanging hun. 👌
That is just appalling Jill. I am so sorry, they cancelled your long awaited appointment. OMGosh, it seems you can not catch a break. I will check out your PM. hang in there JillyMo. Big hugs🌷
Thank you, Jade s. I have never heard of it before either. But you know, whatever I find out, if it's linked to PA, I will surely let everybody know. 🌷
So sorry that you have had such awful symptoms to cope with. Having a name for it hopefully will now help the medical professionals to make life easier for you.
You said this was rare, and I haven't heard of it before, but hoping there are specialists who have previously been able to help others.
One tenacious character can make a difference - glad he is on the case.
I'm off to look this up. Let us know how you get on.
Thanks CherylClaire. I feel even if they don't know how to treat this, whatever it is, knowing WHAT it is helps me so much. This is new, I got the results on a friday, so I have not spoken to my GP about these results yet. I have no idea what they will say or think. I only know what Dr. google says about my results. But I should find out this week. I wonder if they would think this is nothing??? Whatever IgM is mine is almost double the upper range. That has to mean something. and i tested positive for antibodies. This has to mean something. What? I don't know for sure.
I will let you all know. But if nothing else, perhaps my symptoms and tests will help someone else find a hidden AI issue. If you do research it CherylClaire, I think you will find that they mention crohn's disease, and also, rheumatoid arthritis and Lupus. Info does mention, like JillyMo posted, that this has a high rate of being linked to anemia. So that is very interesting. It could explain why some of us don't show traditional anemia. I will be looking into this very much. Interesting though this new set of blood work tests. I believe these tests were to show inflammation for my lungs. I believe to see how much oxygen is in my blood. they also did a blood smear and looked at it under a scope to see the shape of my RBC's and they appeared normal. The first time they were enlarged and oblong with a dent int he center. So the B12 has improved that. Although, I was anemic 5 weeks ago with a 407 RBC count - low range 421 but now it is 433. Still not real high. Confusing though.
Anyway, I am rambling now. LOL I will keep everyone posted on this new finding. It could turn out to be nothing.
Not rambling Ellanore - you're just trying to fathom it all out. Something unknown that you need to study up on.
Make a note of the tests - and (of course) ask for printout copies of results. I have noticed that, with some consultants, numerous blood tests etc are planned and may get done, but scanty feedback means you don't always get to know/remember later.
Yes, ANCA has many links to autoimmune conditions, so although rare may help others here. It seems initially difficult to treat but has good outcomes. Stick to the impressive young doctor like glue !
Thanks Cheryl Claire. Yes it is all new. They've given me some nasal sprays and some inhalers with steroids in because my mucus is very thick and I can't seem to cough it up and it just drains down the back of my throat so terribly.
All of my records and tests are all online from as far back as 2012. So I can go really far back and actually even access my California medical records and pull them into my Iowa medical records. So I've got a really good source of all of my medical records. I can print anything out I can share it with anybody etc. It's very empowering to have access to all of my records. I wish they went back to 2006. Heck I wish they went back to 1984 when all these strange symptoms started.
Anyway, it looks like things are on the move and I might get some answers finally. I will keep everybody informed just in case it can help somebody else. Thank you for all your help!
He lived a full life. however, find an expert in this, typically a rheumatologist.
In his 40s it hit him hard and destroyed his lungs. Typical of GPA (that specific form of vasculitus). If the person survives that they will live long. When he became symptomatic they put him on steroids (2mg per day) and methotrexate weekly. Metho is an oral form of chemo.
Again he lived a full life but he definately felt aches and pains.
Typically one autoimmune disorder will come with another. In his case it was Lupas.
He died at 72 of a heart attack totally unrelated to his GPA. The heart issue was due to his severe high blood pressure that ha had since his 20s. I think had he not had that issue or had the docs fixed it in time he'd be alive and live at least 10 more years.
I'm so glad you have a diagnosis yet sorry to hear it is that.
Oh my gosh B12 life, first off I'm very sorry. It sounds like it was a challenge for him to have this. Again I'm sorry for The loss of your partner.Do you know how he got it and what caused it? Do you think it was something he was born with?
I have a friend who has lupus and she suffers so much from so many different things. People just think that she should just get on with life but I'll tell you you don't realize how sick another person is until you have something similar. I always knew she suffered, but you just don't know how bad until you have it. I don't know if I have lupus, I don't even know why I have this. It's quite a surprise to me and I haven't spoken to any my doctors about it yet. So I'm just left to research on my own right now. I don't even know which form of this I have. Or even if it's a false positive. I just don't know.
Thank you so much for telling me this. Did your partner also have pernicious anemia by any chance? Or B12 deficiency? I'm just wondering if there's a link. I had Lyme disease for 35 years undiagnosed, I was wondering if maybe that caused this. Or if maybe hormone suppressant injections for endometriosis, at the age of 23 could have caused it. Or anything I have. I've never had an answer to why I'm like this. Maybe there is no answer. anyway thank you again so much B12 life.
Well he never found any info on what causes it. Like most autoimmune they just don't know.
A rheumatologist will be the specialist most able to help. they take a while to get into no matter where you are, so get that ball rolling., Not sure about your form, but GPA was a form where the veins grow wild into places they shouldn't and then die damaging the organs. It's, I hate to say, bad. Never realized an autoimmune disease could do something like that. You may have a mild form of hit. Despite him having a severe form of it he kept it at bay with treatment and lived a good life. he was still working at 72 and quite active. I would get to a rheumatologist and get on this. you should be just fine under their watch.
And if your b12 was low, keep on treating that as well.
Well it sounds really nasty. Again I'm very sorry for his suffering. But I'm glad to hear that he lived a full life. I would really like to start being able to live mine. I hope that they can help me whatever this is and get me under control. I suffer from adhesions. For some reason I develop adhesions more than other people. And I've had excruciating abdominal problems for decades. Maybe this is my answer. I hope so. Thank you so very much for chiming in and giving me all this very helpful information.
Most regular docs had no clue what it was its so rare. But all in all, you should be watched over by a rheumatologist at least to start. I would say get on that so they can assess what is going on.
I for sure will B12 life. Thank you!! I just got another blood test back just now and it is a little scary. It mentions multiple myeloma. Now I'm going to have to look and find out what that is but it's some kind of plasma cell disorder.
More blood tests keep trickling in. They took 21 vials of blood from me. The latest results are that my lungs are in bad shape. My oxygen is very low in my blood. I'm not getting oxygen to my organs and tissues.
Still waiting for more results. Then I guess they will want to talk to me.
Thank you Jade s. 21 vials of blood. Lots of blood tests. I have confirmed vasculitis but we don't know which form. But I feel it's the Granulomatosis with Polyangiitis (Wegener’s) form. As those symptoms are most like mine. They are sending me for further testing for Multiple myeloma. You're so smart. I have a CT on my lungs coming up. As well as a rheumatologist, hematologist and a pulmonary specialist.
The treatment is steroids. Which would cause weight gain that I just do not need. But I feel this is why I'm not getting the blood I need to my legs and my feet. Because my blood vessels and arteries are swelling and it's not letting enough blood to my lower extremities in my hands. It's really causing me a lot of problems. I'm extremely fatigued. I just have no strength or energy.
At least I've been persistent enough and have done enough research to lead my doctors to this. It has been very hard not to give up. And very hard to keep trying to self-diagnose myself. But finally I got a doctor to hear and see me and he ran the proper tests. And I believe he saved my life. I believe I saved my own life. There's been some days that I've gone to bed and I just didn't think I was going to wake up.
People with one autoimmune disease often have more. I don't know if B12 is a precursor to something like this or vice versa. In case any of you have vasculitis there is a vasculitis foundation.
It's very important that we don't give up on ourselves. If you think there's something else wrong with you besides B12 deficiency or pernicious anemia, it's important that you insist and persist to save your own life. Nobody cares more about you than you do. It's up to us to take care of ourselves and to pay attention to our symptoms and to read all we can. I have been reading and reading and reading and researching everyday for a year now. I'm so tired but I feel like I have to continue cuz nobody else is going to do it for me. Frankly, people have their own lives to worry about. That's why you have to worry about yourself.
I can tell you no GP is going to give a darn about you. they simply don't have the training. My GP was so overwhelmed today He did not know what to do about my blood test results. So I told him just research all this and get back to me And I handed him a whole pile of blood test results that I printed out.
I just really feel like he just really doesn't want to deal with a patient like me. He was very agitated today. I think he felt very blindsided about my appointment. He thought I was just there for a chronic ear problem. Surprise! He could not get out of the room fast enough. When I told him that I had confirmed vasculitis he looked at me and said who told you that and I said Dr ***** it's all right here. And I handed him all my paperwork. I sent him a message days ago telling him that I would really like to speak to him about my test results and if he could please go over them and he never did. So it's up to me and it's up to us to be our own advocates and to take care of ourselves and to push and push and push until we get the care that we deserve.
I should not have been left to fend for myself this whole year with this new diagnosis of pernicious anemia and now vasculitis and who knows what else. I have been left completely to fend for myself. This is the only place I've been able to find the help I need. Thank you all very much for helping me get through this first year. ❤️
I completely agree, we have to take our health by the reins and push, push, push until we get answers, and indeed not to give up on ourselves! We should always trust our gut when you know something is not right, even when we get dismissed over and over again.
Sorry that your doctor behaved so helplessly. I also get the feeling that they get annoyed when we have control over our own health. They can't seem to handle it when they're not calling the shots. That's been my experience at least. I hope the 3 specialists will be able to keep up better!
Steroids do suck but they did help me - I was also on high immunosuppressive doses for over year until I figure out the problem was B12 deficiency (long story). My sister-in-law was also on them for a few months several times for sarcoidosis. We both gained a bunch of weight (me more than her because I was on them for longer), but we both lost it relatively easily after tapering back down... though the tapering itself was a bit of a bitch. But I'm sure it'll help get the situation under control, and hopefully you won't have to take them for too long.
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