I have seen my doctor again and have now finally found my private health insurance from work highly useful! My doctor wants me to see a rheumatologist as soon as possible or preferably last week. She takes my condition very seriously and know how serious it could possibly be. She suggested I seek help in a private hospital as I have the insurance. Said and done, I called the insurance company after I arrived work and they approved my need to see a rheumatologist ASAP and gave me the phone number to a private hospital very close to where I live. Called the hospital after my lunch break and I got an appointment on June 8th!
On June 7th I'm going back to see my doctor again for a gastroscopic exam because of my gastritis issues. My doctor wants to see if a cause for the gastritis can be found. I've been through that procedure once before. That time I got a sedative medicine that was supposed to make me forget everything, but I do in fact remember EVERYTHING from that time. I remember I was totally fine having that procedure so I'm not nervous about it now. If it can give answers and possibility for a better treatment, it's well worth it!
My doctor believe it quite likely I have Ehlers Danlos Syndrome so she wants to have me tested for it as soon as possible, and if I indeed get diagnosed with Ehlers Danlos Syndrome she will make sure all of me gets tested for all possible problems the condition can cause. Ehlers Danlos Syndrome may cause so much more than just floppy joints and pain, it can also cause more severe issues like Mitral Valve Prolapse in the heart, or generally weak blood vessels so it's very important to get a diagnose and know how the condition affects the individual and have regular checkups of the heart and monitor how the joints are doing.
There are many types of Ehlers Danlos Syndrome. The most common types are hypermobility type Ehlers Danlos, and Classic type Ehlers Danlos, both those may cause Mitral Valve Prolapse, or at least the hypermobility type may.
The other more common type is the Vascular type, it's much less common than Hypermobility and Classic type, but Vascular type Ehlers Danlos can be very severe and even deadly, it is considered one of the most severe types of Ehlers Danlos. There are other very very rare types of Ehlers Danlos too which can be more severe but those have had so few cases around the world so they are rarely mentioned.
In my case it is the Hypermobility type Ehlers Danlos which is suspected, possibly with a touch of Classic. As far as I have noticed, I have no issues which could indicate any Vascular Ehlers Danlos.
I could also have another connective tissue issue, but as it looks today, Ehlers Danlos Syndrome is the main concern.
Just thought I'd give you all an update.
Saturday, May 28, 2011
Friday, May 20, 2011
Getting closer to a diagnose?
It's been a long time since I last wrote anything here. I've been pretty busy lately with working, studying, moving and not feeling great in general. My semester is about to finish now, have finished the written exam and only have the spoken exam left. I moved to my own apartment little more than 3 weeks ago now and no longer commute as far to work! I have a great 72m2 apartment with a stunning view from the 13th (actually 14th from ground level) floor.
With the move I also got a new doctor who I had an appointment with yesterday morning. And what a doctor! She is just outright amazing! She didn't just listen, she also had an idea! And when I told her I suspect I may have Ehlers Danlos Syndrome she even said it is possible going by how many of my joints are constantly achy and how flexible I am, plus that I showed her some odd stretch marks and scars. A regular doctor who actually knows what Ehlers Danlos Syndrome is! She could even spell it without asking! I didn't even need to use my long list of symptoms I had written down. Now I have a team of two professionals determined to help me. My doctor and my physiotherapist! The next step now is to see a rheumatologist (who can send me on to the hospital if needed) and my doctor said she may be able to cut the waiting time for seeing the rheumatologist as my problems are pretty bad and getting worse. Normally the waiting time to see a rheumatologist here can be months, she's hoping I can get to see one in just weeks!
I know it can be other things making my body give up on me like this, but no matter if I have Ehlers Danlos or not, my body is misbehaving and I want to know why! EDS is a heavy diagnose to get, but I'd rather know than not know. Whatever it is, I can deal with what my body is doing, I just want answers! I am at peace with the changes in a way. The pain is getting to me at times, but most of the time I can handle it and keep going like normal, whatever normal is ;)
To me "normal" is to be able to scratch all over my back without problem, or put foot up on something at chest height and tie my shoes with straight legs. Both those things make my workmates go all "OMG!" because they can't do it. It has also become normal for me to rest more and more when off work. It also happens I use crutches for walking outside on days my hands and wrists are not hurting too much. Other days I just walk unaided and hope my knees and ankles won't act up too much. My knees can be a bit wobbly and my ankles likes to lock. It's not a nice feeling when an ankle locks, it hurts!
I'll try to get better at updating here.
Laters
With the move I also got a new doctor who I had an appointment with yesterday morning. And what a doctor! She is just outright amazing! She didn't just listen, she also had an idea! And when I told her I suspect I may have Ehlers Danlos Syndrome she even said it is possible going by how many of my joints are constantly achy and how flexible I am, plus that I showed her some odd stretch marks and scars. A regular doctor who actually knows what Ehlers Danlos Syndrome is! She could even spell it without asking! I didn't even need to use my long list of symptoms I had written down. Now I have a team of two professionals determined to help me. My doctor and my physiotherapist! The next step now is to see a rheumatologist (who can send me on to the hospital if needed) and my doctor said she may be able to cut the waiting time for seeing the rheumatologist as my problems are pretty bad and getting worse. Normally the waiting time to see a rheumatologist here can be months, she's hoping I can get to see one in just weeks!
I know it can be other things making my body give up on me like this, but no matter if I have Ehlers Danlos or not, my body is misbehaving and I want to know why! EDS is a heavy diagnose to get, but I'd rather know than not know. Whatever it is, I can deal with what my body is doing, I just want answers! I am at peace with the changes in a way. The pain is getting to me at times, but most of the time I can handle it and keep going like normal, whatever normal is ;)
To me "normal" is to be able to scratch all over my back without problem, or put foot up on something at chest height and tie my shoes with straight legs. Both those things make my workmates go all "OMG!" because they can't do it. It has also become normal for me to rest more and more when off work. It also happens I use crutches for walking outside on days my hands and wrists are not hurting too much. Other days I just walk unaided and hope my knees and ankles won't act up too much. My knees can be a bit wobbly and my ankles likes to lock. It's not a nice feeling when an ankle locks, it hurts!
I'll try to get better at updating here.
Laters
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