Katybug Posted February 4, 2015 Report Share Posted February 4, 2015 I had a really good appointment with my neurosurgeon yesterday. We talked about various things regarding my migraines and numbness in my limbs. The doc had an "Aha!" moment and put these symptoms and circumstances together and feels I should be evaluated thoroughly for Hypercoagulation Syndromes including checking for some bloodborne parasites that I could have picked up from working with animals. He also wants a special echocardiogram done that can image the walls between the right and left chambers better than the regular test. It's called a Trans esophageal echo with bubble test to check for small holes in between the chambers that could allow very tiny clots through to the left side that could go to my brain and be causing the migraines. Anyway, I can't quite sort out how I feel about this. I would be over the moon to find out what is causing these migraines and to be able to start to treat something effectively would be amazing. But, I'm also scared that I will be disappointed once again if we find nothing. I'm trying not to get my hopes up that we will find an answer but I can't stop the hope from running around in the back of my brain. I'm really feeling chaotic and conflicted about it. (I'm a type A....I don't do chaotic very well.) Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 4, 2015 Report Share Posted February 4, 2015 Can I be excited for you?!! I totally understand why you feel the way you feel, as we have all been through so much over the years. I love how your doctor really put some thought into it, and has some ideas. I really hope something shows up to explain your symptoms.Can I ask about the parasite thing? What made him think about it...is it a potential cause of the potential clots? Or, just that parasites have effects of their own that might contribute to POTS?I ask because I am on an anti-Malarial medication right now. I've been on it for almost a month, so far so good. It was given for positive Lyme. I had a Lone Star tick on me 20 years ago, and went to my local doctor and he blew me off. I've had health problems all these last 20 years with no clear-cut explanation. So, I'm not sure how I view the Lyme diagnosis, but I'm going for the treatment anyway. The treatment takes care of a number of protozoa(I think, early morning brain here). So I hope it is covering a lot of possible bases. Quote Link to comment Share on other sites More sharing options...
corina Posted February 4, 2015 Report Share Posted February 4, 2015 Katie, I so hear you on being scared to get disappointed again. Thing is that when we want to make progress we need to take that risk. At times when I couldn't handle the scary feelings I stopped taking tests, but as soon as I got strong enough again I started taking them and chasing for answers. And I have found my answer in octreotide. Currently I'm trying a higher dose as I got worse after surgery in 2013. I hardly dared hope it would work, still it seems it does (I don't even dare saying it!). You may need some time to get strong enough to deal with being scared and possibly disappointed, but as soon as you are I'd say Just go for it! (I hope this piost makes sense haha I'm a bit foggy!) Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 4, 2015 Report Share Posted February 4, 2015 It sounds as if you have already put it into perspective. You are examining both sides of the coin, and deciding for yourself whether or not it is worth investigating. You have been down these roads before, and you know what they are like. I pick that up from the post, and I can relate with that. It is a difficult place to be in. We can be skeptical, but we want to cooperate with a doctor that is trying to help. We need doctors that are willing to consider the possibilities. Sometimes knowing what it is not is helpful. I do not have any advice, and you are not asking for any. I would only point back to the skepticism that you have expressed. I would want to hold on to that, and cooperate with the doctor. I would be reluctant to get my hopes up. If you have convinced yourself that nothing will come of it, but at the same time cooperate with the doctor, you will have protected yourself from a let down. You would have also investigated another possibility, or ruled a possibility out. Sometimes knowing what it is not is helpful. Regardless of what you decide, I wish you luck. Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 4, 2015 Author Report Share Posted February 4, 2015 Thanks for your thoughts, my friends. I am definitely going to go through with the diagnostics. I just needed to talk through how I was feeling. I'm in a "tired of doctors and tired of being tired" sort of mood just now. I think this is an important set of possibilities to rule in or out. ( it's really important to know if I do have it.) I'm just exhausted.Sue - I haven't had a chance to do a lot of research on this whole situation yet, but my understanding from the appointment is that these parasites/infections can cause what is commonly known as "sticky blood syndromes". I have migraines (I'm currently averaging 15 days of migraine a month.) that don't respond well to preventative or rescue meds. I also experience positional numbness in all 4 of my limbs. Even a slight bend in my arms (like holding even the bottom of the steering wheel for more than 6 miles), will cause my arms and hands to go numb. I can't sit on the floor unless my legs are straight in front of me and even then my butt and legs will start to fall asleep. If I bend or stoop/squat down (for example to clean the kitty boxes), I get terrible pressure around my heart and become out of breath. We have done a doppler on my legs which showed venous insufficiency. So, until this appt, everyone (even i) was looking at these symptoms as separate facets of my issues. But this doc, who works extensively with EDS patients, put them all together. Also, the only prolonged relief I've received from the migraines has been after my neck surgery (when I had iv fluids for 2 days straight ) and earlier this month when I received IV fluids during an intestinal infection. I was headache free after these instances for 2 weeks and 9 days, respectively. The doc also said they are finding a higher incidence of Hypercoagulation Syndromes in the EDS population. He is wondering if I have sludgey blood and/or very tiny clots that are creating all these issues. Both the symptoms and my response to fluids are consistent with these syndromes. I don't know where he got info in his medical training re: parasites but before he went to med school, he was a cattle ranch foreman, so I think he has a good grasp from that as to how exposed horse/animal handlers are to parasites. I told him I've wondered if it could be something I picked up at the horse farm because I know at least 5 other horse people that have very similar medical problems with no answers. I thought it could be parasite or infection or even some chemical we use around horses that isn't known to be dangerous. Quote Link to comment Share on other sites More sharing options...
corina Posted February 5, 2015 Report Share Posted February 5, 2015 At times we need a sounding board to help reflect. Good luck on testing Katie! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 5, 2015 Report Share Posted February 5, 2015 That's interesting. AND good that your doctor thought of that. Quote Link to comment Share on other sites More sharing options...
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