Lots of weird stuff going on, would be so grateful for any direction or advice...
Posted , 7 users are following.
Hi - I have multiple inflammatory conditions (hoping to figure out the reason or the larger likely auto-immune one) I don't even know which section to post under, but my most immediate issue today (this happens sometimes) it feels like there is a lump on the left side of my throat, food was going down with difficulty, then I was vomiting everything back up. It still feels like there is a lump when I swallow. Feels like a hair is stuck but I'm 99% sure there isn't a hair. I have a complex health situation that I'm still waiting for all the specialists to figure out - diagnosed with chronic idiopathic angeioedema (last 12-15 years), severe asthma, allergies and anaphylaxis to things like certain pollen and treenuts, some treefruit, chronic pain/elements of arthritis. Recently I've been having some heart weirdness, back and forth to emerg, tachycardic and high (sometimes low) blood pressure (I'm 27 year old female - a LOT of cardiovascular problems in my family, my dad has a lot too and he and I share many health similarities). I've been very dizzy and fuzzy lately, almost passed out a couple times, feel as though I'm high, very tired and EXTREMELY fatigued even though my heart is hammering away like a hummingbird. I'm not overly stressed or anxious, I'm cognizant to seperate those from the symptoms as I've learned over the years anxiety just makes everything worse. They ordered a holter monitor test and I had to do 2 24-hour urine tests to check for adrenal crisis (results not back yet), and they perscribed me betablockers that I'm supposed to start today, but I don't want to take them because what if they don't find out what is wrong then? Will the betablockers mask an issue? Plus I'm already taking 4 reactine a day, omnaprazole, avamys, singulaire, simbibort and sometimes atrovent, toradol and ventolin - and I go on prednisone 3-5 times a year, sometimes for months at a time) so I'm not excited to add another one to the list (my tongue swells a lot for unknown reasons, my left cheek often gets "on fire" and swells and turns beet red, and my limbs swell, especially right thigh, right arm, I have had to take two epipens and countless steroid and benedryl shots/IVs), I'm also a severe asthmatic, and have been going back and forth to rheumatologist to check for autoimmune issues (there is definitely one but they can't agree on which, my ANA is negative but I have almost all the symptoms of lupus, they are thinking psoriatic arthritis because I've had what seemed like "gout" attacks in different joints, uric acid spikes but the Rheum said he believes it to be some level of psoriatoc arthritis, I get joint pain (and some swelling) all the time, for the past 11-12 years), I also have had regular chest pain since I was 12 or so, but it has been getting worse and is lately accompanied by the "fuzzies", near fainting, weak hands, tachycardia, headaches and some nausea. Forgetting things, high-low BP but always high heartrate. They are rushing my cardiology appointment. I'm trying not to worry in the meantime, but now I've been throwing up all day as well. And feel like I can't swallow (not like my throat is like swollen shut, but just like there is an obstruction), sorry for the million symptoms and maybe TMI...there is a LOT more I can tell you, but any ideas on how to speed of diagnosis? Different things I could ask about? Frustrated [sad] Thanks so much for your time and advice! Even with this swallowing thing...it is weird. My allergist (I see her once a month or so) so said she had a similar angioedemic case where the lady had an underlying heart issue and once that was fixed her life was awesome, less angioedema and everything. Rheumatologist wants to put me on Plaquinil for my lupus-like symptoms, but where I have mild psoriasis as well, there is a concern I could get full blown psoriasis and I don't want any more conditions...oh my. I just feel like a bit of a mess lately, especially with such crazy fatigue...any suggestions or tips or ANYthing would be so so so appreciated 
Sorry if I'm all over the place.
1 like, 18 replies
ClaudiaZ pamela02500
Posted
Hi Pamela,
First of all, I want to say thank you for entrusting us with so much of your journey. And I am so sorry that you are going through all of this, especially so young. I'm 28 and have had similar experiences with my doctor's not being able to diagnose my autoimmune. They told me carpal tunnel, RA, lupus, mixed connective tissue disorder, myositis, dermamysotis, overlap disease....you name it. So many tests and so many doctors appointments... so I can really feel your pain. Some of the symptoms that you have now, I have had in the past, especially when I start to flare. Especially the difficulty swallowing or feeling like something is stuck in my throat. I also, have random joints swell and fingers too every so often. Also, the brain fog and dizziness - definitely felt that big time. In fact, i use it as one of my indicators of a flare. It's pretty alarming when it happens and i constantly have to remind myself not to get mad at my body or frustrated with myself. However, I can totally understand why you feel the way you feel, i've been there. In your case, I'm not sure have much direction this is or how helpful this would be but i would definitely keep a journal. That way every symptom you can track on a daily basis and you can track how you've progessed as your team of doctors try to give you a health plan. With conditions that constantly change, sometimes its hard to remember how we felt, even 5 minutes ago, how can we remember?! We're to busy trying to take care of ourselves! so, #1 JOURNAL! and #2. Keep having honest and direct conversations with your doctors. It sounds like you have a good team so thats great. I know some doctors, some times [not always], try to rush us out the door with a quick diagnosis, so pushing them to take time to explain things to you is important. And also push them to run tests even though they may resist. always write notes and write down questions as they may come up in between doctors visits. and lastly, #3. Always bring someone with you to your doctors visits. At first, I would always roll my eyes at my mom for always wanting to come with me. But then one day she told me that doctor's actually take their patients more seriously when they know others are invested in their patients health too. ITS SO TRUE! My rheum [bless his heart] tried even harder to give the utmost care because someone was always with me. It doesn't have to be your mom, it can be your partner or even a friend. I even facetimed my mom in once!
Other people think of things that you don't always think of in the moment because we're processing so much info and emotion during our visits. BONUS: they'll be there to be our emotional support before and after: we can cry, laugh or anything in between and we don't have to do it alone.
I hope this helped. Please reply if you need anything. I'm always down to lend a listening ear.
- Claudia
margaret22116 pamela02500
Posted
hi Pamela, so sorry for your current struggles - I had a lot of this kind of symptom but others too. Definitely sounds auto immune and I wonder with the asthma element if anyone had considered Churg Strauss syndrome?
I have Behcet's which has similar symptoms but with ulceration being part of the symptoms too. If it would be of help to you, there is a great organisation called Vasculitis UK who are very supportive and helpful.
Lupus, Behcet's, Churg Strauss and Sjogren's all come under the umbrella term of Vasculitis. They are variations on a theme. I saw a rheumatologist for a time but they weren't terribly helpful to me and got further by seeing an immunologist. I moved from there after issues over treatment and now see a brilliant vasculitis specialist in Cambridge. I feel for you and what you're suffering.
JenniePoobah margaret22116
Posted
All my best, jen