I am beside myself!!!! Even my family dr thinks one day the medical community will one day put a name to what’s going on with me.... I am 41 (shhhh) year old female who has been told my whole life everything about me is idiopathic. I have I.T.P and have just been diagnosed with Hashimoto’s disease. I have chronic fatigue (when I am in this I can sleep 18 hours a day) (with normal thyroid levels) I get a spinning sensation after migraines, I have weird joint swelling and random blood vessel breaking in my fingers and mid foot causing extreme swelling and discomfort, Hair loss, anemia, mental haze or fogginess and I get weird hives on my face and neck only. I think at this point if my leg feel off I might thing about going to the doctor… I have four kids who really need me but as time goes on I have a real sense of dread that I really may not be here much longer if someone cannot figure out what is going on with me. My body feels as if it is slowly shuttling down. I do realize that sound very dramatic but it is an ongoing feeling. My husband has even voiced this concern. I need help but so far not one doctor has cared to figure this out.
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wow im sorry to hear you are going through this. I wish i could help you but i cant relate to ewhat you are going through. I do have one question. are you taking antidepressants? I know this wont cure you or anything but living like this will take a tole on you. Antidepressants might take the edge off of things. Also have you ever seen the tv show house? I ask becasue the is a doctor out of New York named Thomas Bolte. He is known as the real life Dr. House. There are people who went there whole lives with wierd disorders and were never diagnosed until they seen him. Maybe you can give it a shot. You dont really have anything to loose. He has a website if you want to search him, contact his office, or just learn more about him. Also have you seen specialists? Like hospitals who have reputations for being the best and diagnosing rare disorders???
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That sounds like my story a few years ago. I had some many tests and I do have chornic fatique and I had many migraines but my problem began years ago with the headaches and my doctor is so happy with himself if he can cure me. I can just call him to try something new and he will okay if I come in to see him. So anyways, I finally took his advice and went on Topamax. A seziure medicine that has been found to cut Migraines to almost three times a year. Yeah no sh*t. So he started me on these meds. I had to start low. I had some side effects but everytime I felt these side effects I welcomed them because it meant they were working. Apparently with my migraines, my Nerotransmittmers were firing out of control and my brain was also ON. So now, I take 50 mg. when I get up and 50 mg at 8:00 at night and have been for three years BUT the key to this medicine is it HAS to be TOPOMAX. Can never subsitute to generics. I can subsitute any other drugs but if I change to generic on that I start getting the headaches back. This drugs works for me.
I also had my bloodwork done like my doctor WOW the whole page he highlighted. I had everyblood test know to mankind. BUT he didn't do the LYME Test call the Western Blot Level. which is the most important test
He took it and I did not have Lyme. I was SHOCKED. What else was wrong with me? It was: I have Epstein-Barr Virus. This can flarr up whenever it wants to and the symptoms to me are like Chronic fatigue.
My symptoms are extreme figure, lack of energy, lack of eating, becoming a hermit, my body goes into hibernation and allow it to. I just go with it now. It for me it just the easiest. I sometimes wonder if is the bodys way of telling us to slow down and relax, breath, drink a glass of wine while the children do the dishes and clean up the kitchen. Wow four kids!!!
My mother had eight, so SHE did NOTHING. We were the ones that did JOBS. We had list. She was a soldier. She is 92. Everynight the 3 girls did the dishes. We would switch. One would wash, one dry and one put away. It was probably one of my best memories. My mother would go into her bedroom and read and we would have to knock if we had a question or problem.
If your test found that you have Hashimoto disease all you need is Thyroid med, which is one of the oldest drug I know of. The should call you in a script. It is a cheap drug you take daily but you have to start at a low low dose and go up slowly until they like the look of your blood. See the Thyroid levels are just a joke just like the Lyme. When are the American medical ass. going to start working for a change.
If you aren't happy with your doctor, find a new one. I went through four doctors, One actually told me to leave her office because I had such a full blow MIGRAINE and my husband carried me in. She gave me shot of something and I threw up and was holding my head and crying.
And instead of her calling an Amulance she told my Mother who came with to take me out. She was done with me. So they took me home.
I started asking people I worked with about doctors and where they went and asked them who there doctor was and started to like what I was hearing about Dr. Tony. So I made an appointment and he is like a best firend.
I wish that for you. I wish that for everyone.
Just to add one more thing. Because of your medcial history, Shingles Shot at 60 may be something to look at or if not, and you get Shingles get medicine right away because I didn't. Long story and I damaged nerves so I have to take a pill every 8 hours until they heal. I was in pain with that for two year until we figured it our. dudddddd
Feeling better and back to working out.
So may I also suggest a nice Merlot. Don't give up.
Shine.
I also had my bloodwork done like my doctor WOW the whole page he highlighted. I had everyblood test know to mankind. BUT he didn't do the LYME Test call the Western Blot Level. which is the most important test
He took it and I did not have Lyme. I was SHOCKED. What else was wrong with me? It was: I have Epstein-Barr Virus. This can flarr up whenever it wants to and the symptoms to me are like Chronic fatigue.
My symptoms are extreme figure, lack of energy, lack of eating, becoming a hermit, my body goes into hibernation and allow it to. I just go with it now. It for me it just the easiest. I sometimes wonder if is the bodys way of telling us to slow down and relax, breath, drink a glass of wine while the children do the dishes and clean up the kitchen. Wow four kids!!!
My mother had eight, so SHE did NOTHING. We were the ones that did JOBS. We had list. She was a soldier. She is 92. Everynight the 3 girls did the dishes. We would switch. One would wash, one dry and one put away. It was probably one of my best memories. My mother would go into her bedroom and read and we would have to knock if we had a question or problem.
If your test found that you have Hashimoto disease all you need is Thyroid med, which is one of the oldest drug I know of. The should call you in a script. It is a cheap drug you take daily but you have to start at a low low dose and go up slowly until they like the look of your blood. See the Thyroid levels are just a joke just like the Lyme. When are the American medical ass. going to start working for a change.
If you aren't happy with your doctor, find a new one. I went through four doctors, One actually told me to leave her office because I had such a full blow MIGRAINE and my husband carried me in. She gave me shot of something and I threw up and was holding my head and crying.
And instead of her calling an Amulance she told my Mother who came with to take me out. She was done with me. So they took me home.
I started asking people I worked with about doctors and where they went and asked them who there doctor was and started to like what I was hearing about Dr. Tony. So I made an appointment and he is like a best firend.
I wish that for you. I wish that for everyone.
Just to add one more thing. Because of your medcial history, Shingles Shot at 60 may be something to look at or if not, and you get Shingles get medicine right away because I didn't. Long story and I damaged nerves so I have to take a pill every 8 hours until they heal. I was in pain with that for two year until we figured it our. dudddddd
Feeling better and back to working out.
So may I also suggest a nice Merlot. Don't give up.
Shine.
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Kelly Excellent question.... I am on antidepressants. I reread and can understand why you would ask. please understand it all just comes from an extreme frustration level. I have seen a hematologist who ran a couple test to more accurately diagnose my platelet prob but then he said idk... "you can live with it so may you should just move on" and the thyroid dr. I will look this dr up.
Thank you very Much !!!
Thank you very Much !!!
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Kelly to answer your question... Yes I am on antidepressants. I reread my post and really understand the question but please understand it all comes from a place of pure frustration and a touch of fear. I have seen a hematologist for my platelets he ran some tests then threw his hands in the air said "idk... but you can live with this so i suggest moving on" I have seen the thyroid dr about my thyroid and a orthopod and that's about it. I will look up Dr. Bolte couldn't hurt !!!
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Lee, I do like the way you think !!! LOL
For me the extreme fatigue is the hardest part... i am in such a fog i clean and have NO memory of where I put the stuff I cleaned up. My father keeps reminding me that I need to keep in mind that all doctors are still practicing because none of them will ever get it right all the time. I take 75 mg of topamax for my migraines it doesn't really help. The migraines are new for me too never suffered from them growing up, just in the past 3 years.
And yep 4 kids ages 20 down to 6. they are fun and funny !!
that being said ... I am ready to shut out the world and curl up with a blanket and ill skip the Merlot and got straight to something stronger.... naaa ill take a beer... LOL :))
For me the extreme fatigue is the hardest part... i am in such a fog i clean and have NO memory of where I put the stuff I cleaned up. My father keeps reminding me that I need to keep in mind that all doctors are still practicing because none of them will ever get it right all the time. I take 75 mg of topamax for my migraines it doesn't really help. The migraines are new for me too never suffered from them growing up, just in the past 3 years.
And yep 4 kids ages 20 down to 6. they are fun and funny !!
that being said ... I am ready to shut out the world and curl up with a blanket and ill skip the Merlot and got straight to something stronger.... naaa ill take a beer... LOL :))
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also I have not been given any meds for my thyroid as of yet....i keep asking and they keep saying my thyroid levels are normal range.
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Hi,
Have you considered trying Dr. Thomas Bolte or Dr. Edmiston I've heard good things about both. They have very different approaches though, so you may like one more than another. I wish you all the best and want to say that idiopathic is just another word for "we don't know." Don't give up.
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