Heartbroken

I thank every single one of you ladies and gentlemen for your inputs. I took some of it and then stopped it, due to the horrible side effects.

Happy new year to each one of you. Just wondering if you guys have Hypermobility, EDS or any other type of connective tissue disorder. Recently I have been diagnosed with Hypermobility (after six decades) and my geneticist is testing me for Loeys-Dietz syndrome (LDS). Good luck to all.

Wishing you speedy recovery Pistol, I mean Dysautonomia normal! you are always a great help for all of us. I wish if I were your neighbor, I would've helped you bringing you whatever I cooked and baked.

Thank you so much Pistol. Yes, I do have arthritis and bone spurs. I haven't told my doctor because he doesn't know. MTRJ75 I am the same like you, October/November are the worst due to barometric pressure.

Hi dear ones, Why I feel severe pain in my both legs from being squeezed by my compression socks? is from my arthritis or something else? Note: I have HPOTS. Thanks.

Dear MomtoGiuliana, Thank you so much for your kind reply. I have never mentioned this diagnosis to any of those doctors during my visits, but I finally mentioned it in my message 5 days a go. I have many rare and chronic syndromes and illnesses and have been going to the same health facility with tens of doctors and specialists for more than 20 years. My major problem is I have been labeled with anxiety and hypochondria in my medical records; due to some doctor's ignorance not being able to put their hand on the real health issue. In the past, it took 44 years until I diagnosed myself with POTS and NMH and then they referred me out of state to Vanderbilt to get an official diagnosis which they did. It took me 15 years to diagnose myself with EDS and then convinced my PCP to refer me to a geneticist, which he did (out of state). Now, as I mentioned it has been 4 months with this new syndrome, but this time I am so desperate because I have no life. Yes, there is a strong link between EDS and Slipping Rib syndrome. I have been describing my pain to all those doctors, but none of them had a clue. I have been searching really hard to see if an MRI would show my slipped rib. The answer is No. I have chatted with (Slipping Rib syndrome) patients, they have a FB page. Did you ever find out what was the cause of your flank pain and hematuria?

I have been in severe stabbing intermittent pain in my mid back for 4 months. I have seen 5 doctors including internists and one neurosurgeon. None of them did a real physical exam. I have %99 symptoms of (slipping Rib syndrome) I am advocating for myself and trying to be diagnosed. I asked my PCP to refer me to an orthopedic or to have a (Dynamic flow Ultrasound), but he ordered an MRI for my thoracic area. As far as I know, an MRI would not show a slipping rib or cartilage since I will be laying flat. I sent him a long message on the Patient portal 5 days a go, I haven't gotten a reply yet. 5 days is way too much for my long undiagnosed pain and disfunction. My question is how to convince my PCP that I have been misdiagnosed with anxiety and hypochondria without injuring his ego? how to tell him I am really suffering from real pain and I have daily functional limitation? Is it OK if I send him YouTube links from top professionals? I will greatly appreciate any input.

cmep37 & Sushi Thanks for your replies. Gentle hugs for both of you.

Anyone here has EDS? have you been to Dr. Aubrey Milunsky in Cambridge , MA? I will see him in December 2021. I have almost all EDS symptoms.

Thanks Kim. Wishing you better health. Appreciate your kind reply.

Kim, Yes it runs in my family, but for some reason (probably aging and developing many other illnesses) I am getting worse and worse. May I ask who treated your underlying autoimmune disease? Thank you.

Thanks Pistol for your sincere reply. I have been walking on the shoulders of giants to be treated for my EDS. My GP who is an internist has no clue. I found only one geneticist in my state, he is booked out for 3 years. Yes, it is extremely hard for health providers and me to manage my health with all of those diagnoses. I no longer know what symptom belongs to which disease.

I have asked both of my GP and EP to have another TTT, but they both said: Oh well, we know you have had 3 positive TTT s in the past decades a go, there is nothing to be done. I had one TTT overseas, another one in my state and the last one was in Vanderbilt.

During my visit I asked my EP if he ever heard of taking blood samples in 3 positions. He said NO!

@MomtoGiuliana You are definitely right regarding how those Dr.s have a simple understanding about Dysautonomia. I have been to 19 cardiologists and EPs, none of them were interested in my condition except 2 of them, one in Vandy and one in California. This EP did not bother to physically examine me, only his nurse listened to my heart quickly. I was diagnosed with a TTT decades a go. For decades I had a very bad tachy, but in the last 5 years switched to brady because of Hypothyroidism and Hashimoto's, but still getting frequent SVT. Thanks for your reply.

To be honest with you, my EP has so little information about POTS, he is more interested in treating heart rhythm disorders, mostly he does ablation. I have non sustained SVT and atrial tachycardia. Regarding my norepinephrine receptors, I have no idea. Doctors here never dig that deep with an uncommon syndrome. Thanks for the stroke risk reminder.

I have tried many meds since I was diagnosed after waiting for 44 years to get diagnosed. None had worked or I had severe reactions to them. I have Hypothyroid, Hashimoto's, Arthritis, Reactive arthritis, Osteoporosis, EDS, hyper POTS, NMH, migraine, SVT, Atrial Tach, Radiculopathy and some other conditions.

Thank you guys for your replies. My major problem is my BP which gets high whenever I stand, also my tachy would reach 155BPM. Like wise my Migraine med will interact with Northera as I mentioned in my previous post. If my BP is already high, why would I take a med makes it higher? CallieAndToby22, No he never explained that. I am taking Atenolol and many other meds for other conditions including Eleteriptan for migraine. He did not take me off of any of them. I am still not satisfied.

Here is what he has written to me today: (The only way to see how you do with the medication is to try it, If you don't feel better on it, then we stop it. If you don't wish to start it, that's ok too. I am not concerned about any dangerous side effects if you do choose to start it). My question is should I stay with him?

Good luck for you Sara Tee.

I saw Dr. Biaggioni back in 2012 and I no more have access to him to send him a question. I am pretty sure he will not approve this medication for me. Plus I have been on Eletriptan for 16 years for migraine and I am still on it, but in the information I read about Northera literary says: Avoid Eletriptan if you take Northera. Do you believe that? how in the world he wants me to take it then?

Thanks dear.

Thanks for your input. I have been using abdominal binder for decades. Hope you continue feeling good with all those meds.

CallieAndToby22 / targs66/ KiminOrlando/ Sarah Tee/ Jyoti/ Pistol I can't thank each one of you enough for all your sincere replies. You guys gave me goosebumps for all your knowledge, I wish if those 18 cardiologists/ Electrophysiologists whom I have been to knew what you all know. Thankfully, I have this privilege which I can send messages to all my providers. I wrote for him: Dear Dr. (.......) I was diagnosed by Dr. Italo Biaggioni, M.D. Professor of Medicine in Vanderbilt with (Hyperadrenergic pots) and that is true, because both of my blood pressure and heart rate will elevate when I stand. And as you know that is due to high Adrenalin. I was given the same diagnoses by Dr. Ahern in California and by many other EP s. I have provided you all their reports and tests. My norepinephrine (in standing position) is high (Last test was very high that made my Dr. suspects Pheochromocytoma, which was ruled out later. Now, my question is, Northera increases norepinephrine and I already have high levels of it, do you think it will be right to take this boosting norepinephrine medication? I haven't taken it yet because I am concerned. It is true that I have another condition under the autonomic dysfunction's umbrella, which is neurally mediated hypotension. But this condition in my case is not on regular bases. It happens once in a while. Best regards. I will update you all as soon as I hear from him. Note for Moderators: Delete my letter if not allowed.