Omg, you are awesome! Thank you for this. Its been 13 yrs for me, what drs did discover, i use as puzzle pieces and its really hard to learn the source of problems when one doesnt even know the names of symptoms being experienced. Trying to describe pain or symptoms in a physical sense is impossoble without giving the Dr or listener a visual first and relating it to something theyre familiar with but its just out of this world & makes people think less of you. Its like the feeling of "having an elephant sitting on your chest" being hallmark sign, im sure many people were discredited before realizing typical, signs and symptoms. Its even harder when its TBI & neurological. Id love to meet you. I believe i could be a great example or lesson to prove diffreiental diagnosis and not typical scenarios. Id consent to a lie detector test, i have so much valuable information that isnt known and could help so many people who probably get treated the same horrible way because our suffering isnt text book typical. I just cant move fwd. Is there someone i could collaborate with? 🙏
I live in Türkiye and I had a continuous eye pain since December 2015. The pain started on the deep side of right eye just because I slept 3-4 hours a day continuously for weeks. At that time, even when I was working long hours in front of my laptop, I was like feeling so sleepy but I was still trying to force myself to not to sleep and even the deep inside of my neck was making me feel like something was pulling from the inside and I was feeling kind of a burning feeling in the same time. One day (in one of those sleepy evenings), I stopped by one of my friends flat and I told him that I had to sleep immediately and then I lied down on an empty bed, tried to sleep, but I couldn't do that since I was in a kind of feeling that just becuase of the agonizing pains I felt at the deep side of my eyes, I wasn't able to sleep, and since I could't sleep, I was feeling more and more pains. It became like an intolerable dilemma for me. After like 2-3 hours, I felt asleep in the bed by somehow. And when I woke up in the next morning, I felt like a punctate pain on the right back side of my eye. I went to a opthalmologist in the same day and the doctor told what have have you done to your eyes by looking at the deep side of my eyes with her device and gave me 1-week long sick report and told me to rest my eyes carefull. Since then, the pain has been going on and also proceeding by effecting some different sides on my body. I think I even visited more than 50-60 different doctors during the last 8 years. I used lots of different medicines like Neurontine, Cymbalta, Lyrica, Nepitin, Xanax, Laroxyl, Rantudil and many more different ones.. Besides these, I had Cervical MRI, Brain MRI, Brain MRI (with contrast and some with 5-Tesla), MRI Angiography, Orbital MRI, Cerebrospinal Fluid Test, Visual Field Test, Treshold Test, Eye Tomography (OCT) and many more different test as well. I also had TMU and TMS treatment, Occipital Nerve Blockade, Eye Blockade, etc.. During the last on week I felt like the pain sit on the deep-inner side of my right eye and I can even hear some cracking noises from the achy area by making some chin movements and one more thing I should be adding is that when I try to smoke cigarette, even the first smoke makes my eye's back side feel too painful. Some doctors diagnosed by atypical neuropatic pain, some said somotoform disorder, some said mixture of cluster headache and tension type headache, etc.. Sometimes I feel like 8 years ago a dead point (just like the dead pixels on TV or laptop screens) started on the deep side of my right eye and kept going so on.. I am really very tired of feeling that 7/24 continues pain and don't know what to do.. Sometimes I'm hoping that noone in the world suffer from the same pain as I had, but sometimes I'm hoping that if only I could find anyone in the world who had the same pains during the any time of her/his life and already solved that problem and guide me on how to get the right treatment..
I have a condition now where everything I eat for more than a few days starts causing tachycardia, postural hypotension, shortness of breath, throat tightness, coughing, bloating, skipped heartbeats, diarhhea, and sometimes bloody stools. It seems nearly all foods can cause it, but some foods do it more readily than others. If I don't eat the food for several months I may regain some tolerance to it but it seems to be quite random if that works or not. I've been struggling with malnutrition and starvation for years because of it and developed all sorts of secondary complications. Laboratory testing has been largely negative. The only things left to test really would be a bone marrow biopsy or another (they've already done one) endoscopy with biopsies looking for mast cell staining... The only tests I've seen show anything strange is high levels of methylhistidine on organic acids, high levels of sIgA on stool test, and high levels of zonulin on stool test. There was frank adrenal insufficiency for a long time along with hypoglycemia but after I gained weight on steroids it seemed to go away even after I stopped having steroids. Any ideas for how to figure this out? I've been persistent. I've seen many docs... They don't think people could have a condition like this and I keep telling them hey I think my immune system has some kind of problem with tolerance...
Despite normal tests, this sounds like it may be MCAS. A bone marrow biopsy is usually not needed nor helpful. You should try to find a physician who is knowledgeable about MCAS. - Dr. Saperstein
I am so THRILLED to be seeing you soon!! I have been searching for 20 years for some answers. I have found it here in Arizona. Can’t wait till October my appt.
Sir i m really fed up , unable to find out the real cause of my problem, i dont take much medicines usually but i used to get lots of allergies on and of and cetrizine eased my problem , in 2016 i took antiallergy gor the same problem and i got hoarse voice which remained for 4 years and thn again in 2020 due to anti allergy i got my voice back but i started getting burning sensation and my thighs and down the legs, my urine also changed , i get se pr the other bactaria in my culture i took medicine for ecoli for 5 days , i lost weight around 15 kgs tht time and it took me 7 months to heal , somehow i gained weight also by using digestive enzymes and antibiotics, my immunity is very low, every second month i get throat infection along with high fever, now again in 2023 march my symptoms reappeard everytime i m eating i m getting pain in my thighs down my legs, sometimes it radiates to back and shoulders too,i took multivitamin amd antibiotics thru IV twice, this time this timei have low grade fever as well which wasnt there in 2020. Endoscopy in 2020 revealed i had antral gastritis, i m unable to find out the cause of my problem , why do i get burning in tbighs and legs after eating anything. I have silent gallstones also. Plz help. I dont know where to go? I get suicidal sometimes
Have you had any elevated tryptase levels or significant increase from base line tryptase levels that indicates Mast cell activation? Tryptase is one of over a hundred chemicals that the mast cells release that also includes histamines, prostaglandins and luekatrines.
I have mast cell issues. At times when the mast cells get activated I get burning mostly in my back (feels like I have a heating pad on high during summer). My GI issues went away after reducing grains and other carbs and going to IF (intermittent fasting) I do 2 meals per day within a 8 hour period. Hopefully you'll find out what works for you. I previously had really low vitamin d levels that I got up to 50-60 from 13. Vitamin D helps your immune system have proper response.
@@darilekron4590 yes vitamin d did help, I developed really bad ear infection, tried several rounds of antibiotics, doctor said we will fix it with surgery. Already so weak , just wonder how many more problems I m yet to face 😔
When you go to 4 neurologists who don't come up with anything, and it seems like you're just wasting your time and energy with people who have gone to school, for what, 13 years (each) ? And they can't put a finger on what is going on overall? Really!!!!!?????
Sorry that has been your experience. Unfortunately, this is not uncommon. There are significant diagnostic delays often. If you'd like a second opinion (or 5th in your case), please reach out on our website using Klara; a HIPAA-compliant way to communicate.
@@centerforcomplexneurology As much as I appreciate the offer, I went to Klara and found it to be a 'pay for service' site. Respectfully, testing has costs us over 5000.00 to date, and can not incur more debt on an uncertainty. Thanks again :)
Omg, you are awesome! Thank you for this. Its been 13 yrs for me, what drs did discover, i use as puzzle pieces and its really hard to learn the source of problems when one doesnt even know the names of symptoms being experienced. Trying to describe pain or symptoms in a physical sense is impossoble without giving the Dr or listener a visual first and relating it to something theyre familiar with but its just out of this world & makes people think less of you. Its like the feeling of "having an elephant sitting on your chest" being hallmark sign, im sure many people were discredited before realizing typical, signs and symptoms. Its even harder when its TBI & neurological. Id love to meet you. I believe i could be a great example or lesson to prove diffreiental diagnosis and not typical scenarios. Id consent to a lie detector test, i have so much valuable information that isnt known and could help so many people who probably get treated the same horrible way because our suffering isnt text book typical. I just cant move fwd. Is there someone i could collaborate with? 🙏
I live in Türkiye and I had a continuous eye pain since December 2015. The pain started on the deep side of right eye just because I slept 3-4 hours a day continuously for weeks. At that time, even when I was working long hours in front of my laptop, I was like feeling so sleepy but I was still trying to force myself to not to sleep and even the deep inside of my neck was making me feel like something was pulling from the inside and I was feeling kind of a burning feeling in the same time. One day (in one of those sleepy evenings), I stopped by one of my friends flat and I told him that I had to sleep immediately and then I lied down on an empty bed, tried to sleep, but I couldn't do that since I was in a kind of feeling that just becuase of the agonizing pains I felt at the deep side of my eyes, I wasn't able to sleep, and since I could't sleep, I was feeling more and more pains. It became like an intolerable dilemma for me. After like 2-3 hours, I felt asleep in the bed by somehow. And when I woke up in the next morning, I felt like a punctate pain on the right back side of my eye. I went to a opthalmologist in the same day and the doctor told what have have you done to your eyes by looking at the deep side of my eyes with her device and gave me 1-week long sick report and told me to rest my eyes carefull. Since then, the pain has been going on and also proceeding by effecting some different sides on my body. I think I even visited more than 50-60 different doctors during the last 8 years. I used lots of different medicines like Neurontine, Cymbalta, Lyrica, Nepitin, Xanax, Laroxyl, Rantudil and many more different ones.. Besides these, I had Cervical MRI, Brain MRI, Brain MRI (with contrast and some with 5-Tesla), MRI Angiography, Orbital MRI, Cerebrospinal Fluid Test, Visual Field Test, Treshold Test, Eye Tomography (OCT) and many more different test as well. I also had TMU and TMS treatment, Occipital Nerve Blockade, Eye Blockade, etc.. During the last on week I felt like the pain sit on the deep-inner side of my right eye and I can even hear some cracking noises from the achy area by making some chin movements and one more thing I should be adding is that when I try to smoke cigarette, even the first smoke makes my eye's back side feel too painful. Some doctors diagnosed by atypical neuropatic pain, some said somotoform disorder, some said mixture of cluster headache and tension type headache, etc.. Sometimes I feel like 8 years ago a dead point (just like the dead pixels on TV or laptop screens) started on the deep side of my right eye and kept going so on.. I am really very tired of feeling that 7/24 continues pain and don't know what to do.. Sometimes I'm hoping that noone in the world suffer from the same pain as I had, but sometimes I'm hoping that if only I could find anyone in the world who had the same pains during the any time of her/his life and already solved that problem and guide me on how to get the right treatment..
46 years and undiagnosed. I'll never recieve one.
A million thanks for this video!
Glad it was helpful!
Thank you so much for this .
I have a condition now where everything I eat for more than a few days starts causing tachycardia, postural hypotension, shortness of breath, throat tightness, coughing, bloating, skipped heartbeats, diarhhea, and sometimes bloody stools. It seems nearly all foods can cause it, but some foods do it more readily than others. If I don't eat the food for several months I may regain some tolerance to it but it seems to be quite random if that works or not. I've been struggling with malnutrition and starvation for years because of it and developed all sorts of secondary complications. Laboratory testing has been largely negative. The only things left to test really would be a bone marrow biopsy or another (they've already done one) endoscopy with biopsies looking for mast cell staining...
The only tests I've seen show anything strange is high levels of methylhistidine on organic acids, high levels of sIgA on stool test, and high levels of zonulin on stool test. There was frank adrenal insufficiency for a long time along with hypoglycemia but after I gained weight on steroids it seemed to go away even after I stopped having steroids.
Any ideas for how to figure this out? I've been persistent. I've seen many docs... They don't think people could have a condition like this and I keep telling them hey I think my immune system has some kind of problem with tolerance...
Despite normal tests, this sounds like it may be MCAS. A bone marrow biopsy is usually not needed nor helpful. You should try to find a physician who is knowledgeable about MCAS. - Dr. Saperstein
I am so THRILLED to be seeing you soon!! I have been searching for 20 years for some answers. I have found it here in Arizona. Can’t wait till October my appt.
wow. i been struggling for long too
Sir i m really fed up , unable to find out the real cause of my problem, i dont take much medicines usually but i used to get lots of allergies on and of and cetrizine eased my problem , in 2016 i took antiallergy gor the same problem and i got hoarse voice which remained for 4 years and thn again in 2020 due to anti allergy i got my voice back but i started getting burning sensation and my thighs and down the legs, my urine also changed , i get se pr the other bactaria in my culture i took medicine for ecoli for 5 days , i lost weight around 15 kgs tht time and it took me 7 months to heal , somehow i gained weight also by using digestive enzymes and antibiotics, my immunity is very low, every second month i get throat infection along with high fever, now again in 2023 march my symptoms reappeard everytime i m eating i m getting pain in my thighs down my legs, sometimes it radiates to back and shoulders too,i took multivitamin amd antibiotics thru IV twice, this time this timei have low grade fever as well which wasnt there in 2020. Endoscopy in 2020 revealed i had antral gastritis, i m unable to find out the cause of my problem , why do i get burning in tbighs and legs after eating anything. I have silent gallstones also. Plz help. I dont know where to go? I get suicidal sometimes
Have you had any elevated tryptase levels or significant increase from base line tryptase levels that indicates Mast cell activation? Tryptase is one of over a hundred chemicals that the mast cells release that also includes histamines, prostaglandins and luekatrines.
I have mast cell issues. At times when the mast cells get activated I get burning mostly in my back (feels like I have a heating pad on high during summer). My GI issues went away after reducing grains and other carbs and going to IF (intermittent fasting) I do 2 meals per day within a 8 hour period. Hopefully you'll find out what works for you.
I previously had really low vitamin d levels that I got up to 50-60 from 13.
Vitamin D helps your immune system have proper response.
@@darilekron4590 yes vitamin d did help, I developed really bad ear infection, tried several rounds of antibiotics, doctor said we will fix it with surgery. Already so weak , just wonder how many more problems I m yet to face 😔
When you go to 4 neurologists who don't come up with anything, and it seems like you're just wasting your time and energy with people who have gone to school, for what, 13 years (each) ? And they can't put a finger on what is going on overall? Really!!!!!?????
Sorry that has been your experience. Unfortunately, this is not uncommon. There are significant diagnostic delays often. If you'd like a second opinion (or 5th in your case), please reach out on our website using Klara; a HIPAA-compliant way to communicate.
@@centerforcomplexneurology As much as I appreciate the offer, I went to Klara and found it to be a 'pay for service' site. Respectfully, testing has costs us over 5000.00 to date, and can not incur more debt on an uncertainty. Thanks again :)