Getting a Diagnosis

Originally Published: 03/04/18 11:04 am

The last few months I have been pretty MIA from my life.  From my friends, family, co-workers.  I decided it was time to focus 100% on feeling better, because I was sick of just treading water and I want to enjoy my life again.  I have followed and read a lot of posts from other people with mystery illness, or people who did learn what their illnesses was, and a lot of them have kept me going to try to find answers with my own body.  Sometimes it helps just to know you are not the only one going through something, and because of that I decided to write a little bit about my journey.  If it helps one person see that there might be a light at the end of the tunnel, then it would be worth it!  For a rare disease/disorder the average amount of time it takes to find a diagnosis is 7 years, and I know it can be tough!

Keep asking questions, keep getting another opinion, and keep speaking up for yourself!  Speaking up for myself has been the hardest part of this, as that is my biggest weakness, but I am getting better, and will keep trying because you are the only one who can look out for you.

Gullfoss Waterfall, Iceland (my sister Lauren, me)

I took a trip in October to Iceland that really made me look at my life.  I was working to survive, not live.  I had been feeling so crappy I probably would not have even gone if my mom hadn’t bought me the plane ticket for my birthday.  The things I saw and experienced reminded me that it is worth it to keep fighting to feel good.   I enjoyed Iceland, but I struggled a lot.  I fell down a few times walking, made everyone almost miss a bus because I got dizzy trying to do too much too fast, then almost passed out while trying to catch up.  My mom, aunt and cousin went a climbed a glacier while we were there, and even though that’s not exactly my cup of tea, I would have liked to have been able to do it.  I choose a horseback riding excursion by myself, which I was pretty proud of myself for doing, but didn’t want to only be able to do things that didn’t involve actually moving myself.  I was in such bad shape after having surgery that March, that I found myself having to sit down and rest a lot.   I had done a ton of physical therapy after surgery too. I was 33 years old, this couldn’t be how the rest of my life was going to be.  I wouldn’t let it.   I still want to see the world.

The Northern Lights in Iceland (me, my sister Lauren, and Mom)

So I saw a few doctors, and they said all they could do was order more physical therapy (which my insurance wouldn’t cover at this point), or give me pain killers.  My Pain Management doctor even blamed me because I was still taking Plavix, a blood thinner and because of this he couldn’t do any injections in my back or shoulder.   Obviously this was my fault since I choose to take blood thinners that made me covered from head to toe in bruises.  I walked out of his office that day crying and have not been back since.  It gets very frustrating when doctors cannot explain your pain, so they decide you are not worth helping anymore.  I had to “break up” with all but one of my doctors, so if anyone knows of a pain management, primary care, or neurologist that they love, please let me know!!

The one doctor that I do still see is my vascular surgeon, and has been the only one to figure out anything going on in my body since the accident.  I went to him months ago with my current symptoms, but they seemed so similar to what happened last year, that when the tests for my bypass came back normal, he said it might just be some leftover symptoms that I would have to deal with.  It wasn’t terrible yet, so I took that and started working out.  I mostly do yoga, but also incorporated some walking, tai chi, meditation, weights, and stuff I learned in PT.  Anything I could find that might offer some relief.  It helped me feel better overall, and I lost 25 pounds, so it was not for nothing, but my left arm and shoulder just kept getting worse.

I was pretty sure this condition has been somewhere lingering in my body for the last 8 years, but it finally got bad enough to make me really uncomfortable around December 2017.  I finally went to the ER as I had no luck with my doctors.  Lets just say it didn’t go well, and I ended up in a little room crying while some poor tech had to do an EKG on a hysterical young lady.  The tech told me he would pray for me, the doctor I saw did no further tests, and sent me home with pain killers.   I started to see a pattern here.  I went to see a doctor, ended up crying, and left with pain killers because they had no other ideas.  I have been on an off pain killers for the past 8 years and those are the last thing I want to rely on.   Everyone keeps telling me to go back to Pain Management, which can only offer pain killers.  It’s a terrible circle that keeps happening when nobody knows what to do, and the patient is the one who loses.

The pain had to get excruciating, but it finally led me to a diagnosis.  I saw my primary care doctor on Friday, she recommended pain management and physical therapy, again.  I said ok, I will go back to physical therapy next week.  If that is all that will help me, at least it is a new year and my insurance will cover it!  Saturday the pain was so bad and I was losing feeling in my arm ALOT.  My husband, John took me to the ER.  I had him take me to the one at Lutheran General this time, because I felt like I had been blacklisted at Northwest Community after the last time I went, and my vascular surgeon practices out of Lutheran General, so at least if they found anything, he would get the records right away.

I had an EKG, CTA, Arterial Duplex, and blood tests, and nine hours later they sent me home with a clean bill of health.  I cried my eyes out at we left with a prescription for pain killers and no answers.  I was so frustrated, I knew something was wrong, but no one believed me.  This was bullshit.

I called my vascular surgeon on Tuesday.  If no one could tell me anything else, I could at least get a prescription for physical therapy and try to get stronger.  The nurse called me back and told me the doctor did see something abnormal on my CT scan, and that he wanted to see me before sending me to physical therapy.   I saw him Wednesday.  He took one look at me and knew exactly what was going on.  My shoulders were crooked which is very common for Thoracic Outlet Syndrome, because of the pain people usually drop their shoulder to relive the pain without even realizing it.  Well my shoulder had been like that for months and not one other doctor even thought of this condition.  I was so happy he could explain all of my weird symptoms I didn’t even care anymore.  The way I was carrying my arm weird, explained.  The pain, explained.  It felt really good not to leave crying.  I had to get more tests done of course, but at least we are on the right track!

I since had the Arterial Ultrasounds done, but those did not give the doctor any more information.  I am getting an angiogram tomorrow, 03/05/18 and should know a lot more about what is causing it from that procedure.  If they are able, they will put in stents during the angiogram.  If they cannot, then the doctor will know more about how to fix it with surgery.  Most of the time it is either removing muscle, or breaking a bone,  so wish me luck, I think I will need it!

This new diagnosis of mine, which I will wear as a badge of honor, is actually considered a rare disorder.   Here is a link to the website that describes the condition in more detail than I know how to describe.

National Organization for Rare Disorders – Thoracic Outlet Syndrome.


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