I know it's been a little while since I've really updated anyone. I'm still in the middle of a lot more waiting, but thought I would catch everyone up on what we've found out so far and what is to come in the next few months.
Since my diagnosis by the rheumatologist and dermatologist, I have seen an allergist and a neurologist. I am currently doing testing for MCAS (Mast Cell Activation Syndrome) with the allergist. With the neurologist, I did MRI scans of my brain and lumbar spine and thankfully those all came back clear so she was able to rule out MS.
I've had three appointments with my Physical Therapist who is amazing and has even worked with other EDS patients so she knows her stuff. I have learned a lot, believe she will really help me, but just being realistic, it's going to be a very long and slow process to reach our goals. Last Friday she was able to actually give me a little pain relief for the first time in the last couple months. When she works on me though, that night my pain will hurt even more than normal so it can be really tough. It's showing we are making progress though and can pinpoint exactly where my problem is. I still can't believe EDS is really what has been causing my issues, specifically my cramping and leg numbness.
Pain management and finding a pain specialist has been the biggest obstacle. I went back to my GP and was able to get a referral to a new pain specialist since the previous one has not been able to schedule an appointment with me for 4 months. It takes the doctor office weeks to get a referral to the pain specialist so I am waiting to get an appointment set up. I did get a referral to one in Dallas from my rheumatologist, but he is out of my insurance network so it will cost quite a bit for me to see him. Thankfully some good news today! I had a recommendation for a pain specialist from the Dallas EDS group and when I called not only can the see me without a referral, but they are getting me in on Monday because of a cancellation.
The next big appointment is my cardiologist appointment July 5th. I previously had a rheumatologist and allergist appointment scheduled for that day so when I had to reschedule, the next available appointment for my rheumatologist is in September. The next step with her is to get the genetic test done to rule out any of the other Ehlers Danlos Syndrome types, especially Vascular. For my cardiologist appointment I'm obviously getting my heart checked with the chest pain and palpitations that I have (more thorough than tests I've had in the past when we lived in SC), but also to confirm POTS (Postural orthostatic tachycardia syndrome).
I will make another update post after my cardiologist and pain specialist appointments.
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