← Return to What can I expect with Antiphospholipid Syndrome (APS)?

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@JustinMcClanahan

Hello @katmorganus , you may notice I moved your discussion about Antiphospholipid Syndrome to this existing discussion:
- What Can I Expect with Antiphospholipid Syndrome (APS)?
https://connect.mayoclinic.org/comment/906055/.

I did this so you could read others' experiences with APS and meet members like @paktoledo, @mskeith, @kimbersue and @nugget84.

@katmorganus, you mentioned wanting to Connect with others who are experiencing similar side effects as you. If you are comfortable, do you mind sharing what some of your side effects are?

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Replies to "Hello @katmorganus , you may notice I moved your discussion about Antiphospholipid Syndrome to this existing..."

Thank you

When I was in my late 20's. I woke up and thought my arm was asleep, and then it felt like it was on fire. By the time I made it to the closest hospital I had gone into shock. I had had a DVT. I had lost blood flow to my lower left arm for long enough that I ended being hospitalized for 3 months. And that 3 months I had to go through demarcation and tissue death of my fingers on my left hand. I had to watch my fingers "die" when the demarcation got to the furthest point it would get to and dry gangrene set in they amputated. I was on massive painkillers for those 3 months and then had to battle with opioid addiction in the early 2000s when not a lot of people knew what it was or how to treat that. Furthermore I through batteries of tests and they could not figure out what had caused the blood clot.

Then I went through physical therapy, and counseling. I had to learn how to readjust my entire life and learn that it was okay to be clumsy. Learning to live have massive nerve damage on my left hand.

I was diagnosed with the MFTHR gene mutation right away but it wasn't until 2 years ago that I was finally diagnosed with APS as well.

I think my two biggest side effects would be. I have chronic migraines that they are unable to treat, or have found an effective treatment for since most medications for migraines restrict blood flow which is detrimental when you have APS.

My second biggest side effect is the fact that I cannot fight any infection even the common cold will put me on my butt for at least 2 weeks.
I also have chronic sinus infections that I've had two surgeries to try to help correct, but I cannot fight off the simplest thing.

I guess just a list of third thing I've had probably about 12 surgeries in total, all due to problems with my body that APS combined with MFTHR gene mutation have caused.