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.

On 7/9/2021 at 6:09 AM, Lakelady said:

Lakelady, Glad you had that good deal. Good luck.

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

9 hours ago, KiminOrlando said:

Does EDS run in your family? If not, you would likely be looking at EDS type 3. The reason I ask is that EDS type 3 is not genetic, so a geneticist would be a waste of time and money. It is a clinical diagnosis, typically made by a Rheumatologist, I think. 

To echo @Pistol I also treated my underlying autoimmune disease which helped my POTS. I also used hydroxychloroquine and some other meds. It helped. 

Keep digging.

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.

On 7/12/2021 at 4:11 AM, Pistol said:

 

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. 

17 hours ago, Pistol said:

@Heartbroken- it is possible that the docs want to only look at the symptoms they KNOW, like SVT and atrial tachycardia. They might explain all your symptoms are from that instead of dysautonomia. Having diagnoses that they can treat often overshadows the necessity to deal with POTS. Since your last TTT was so long ago I would ask for another one, if you have worsening symptoms upon standing this test would be appropriate, no matter what the doc thinks. In POTS we develop sinus tachycardia upon standing - SVT or AT during it would not necessarily confirm a dysautonomia diagnosis. So as far as I know if you develop sinus tachycardia they would have to acknowledge POTS. 

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.

On 7/6/2021 at 11:40 AM, KiminOrlando said:

If it was me, I would reply back that I am concerned about the stroke risk. High/Normal BP, elevated norepinephrine, and wanting to give a med that further elevates these things are concerning. Are they expecting a paradoxical effect or is there some other mechanism that makes this drug work for you? You are not trying to raise your blood pressure. Your blood pressure is ok most of the time, is my understanding. Isn't it dangerous to keep it elevated 80% of the time just to bring it up the other 20%? Does stroke run in your family? It does in mine. Is this a test to see if your norepinephrine receptors are broken? If they aren't properly receiving the norepinephrine, then it won't matter how much you have in your system. If they aren't broken, they will receive the norepinephrine. He didn't specifically answer what happens if too much norepinephrine is released and received into your system. Does he know the answer? I don't, but your doctor should.

Most people don't try a drug and see what happens when their concern is a stroke. It isn't an easy side effect to deal with like dizziness or weight gain. Maybe if you readdress your concerns in that light they would be more receptive to giving you specific answers? Or maybe not. If they can't or won't address your concerns over a stroke, then I would be looking for another doctor, but that is me. You are right to be concerned. Always follow your gut. You have the most to lose here.

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:

11 hours ago, Sarah Tee said:

Good for you, @Heartbroken! 

I have got two important appointments coming up, so I will be looking back at this thread to try to be prepared, and also to remind myself that you can always go back to ask questions or get clarification.

Good luck for you Sara Tee.

23 hours ago, CJ65 said:

Fantastic letter. I saw Dr Biaggioni and send him questions from time to time which he or his NP answer. Have you asked them about Northera? I’m sure they could give great input. Best of luck

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?

1 hour ago, Jyoti said:

@Heartbroken--glad you wrote that letter.  It is a very responsible stance.  It is so easy, especially when we feel overwhelmed with symptoms and exhaustion to just trust someone in authority.  But you are taking care of yourself by asking the obvious questions and not acting until you feel like the recommendation is right for you and your body.

Thanks dear. 

2 hours ago, p8d said:

I think that’s a very balanced and polite letter. Good for you for being your own advocate. I have similar symptoms, hyperadregenic POTS with NMH and supine HTN and my cardiologist prefers to treat my usually high BP with guanfacine ER twice a day (for high norepinephrine), carvedilol in the evenings for supine hypertension and a tiny dose of ivabradine for HR in the morning. Ivabradine also raises norepi but I do ok on 2.5mg once a day. I have found that an abdominal binder works very well for the OH if I plan to be upright for long because my BP will drop 30 points on standing, then goes up for about 5-7 minutes and then starts to go lower and lower after that. It took years and a ton of meds to find a combination that generally works but weather/flares/overdoing it etc throw it off. PM me if you want to know the brand of abdominal binder. No prescription required! 

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. (.......)