Dr. Tinkle Diagnosed Me With Eds. Now What?

[Kris4444]

Hi,

I heard from Dr. Tinkle today. He is diagnosing me with EDS however, he made it very clear that he believes there is also an underlying autoimmune issue going on and he doesn't want the diagnosis of EDS to cover that up. He said is going to continue to work with my rheumy to get to the bottom of what is going on.

He brought up some interesting points. He said that the reason he feels there is autoimmune stuff going on is because of my Raynaud's and other things that he didn't go into that he said need to be addressed. My current diagnosis (rheumatologically speaking) is UCTD but was Scleroderma.

I pointed out to him that my ANA has always been negative (with the exception of one test where it was positive but a very, very low positive). He pointed out to me that my new immunologist said that my IgG's are very low which means that my body isn't producing antibodies at this time. This makes perfect sense! He said that I am seeing the right doctors and that he feels they will get to the bottom of this.

In the meantime he wants me to see his physical therapist so that I can learn more about the disease. He also ordered a gastric emptying test. FINALLY someone who hears me!! My GI doctor won't even order one. I have severe colonic inertia but lately I feel my stomach isn't emptying properly. My guess is that I have gastroperisis. When I eat I stay full and bloat to literally twice my width. This does not go away until morning. I am currently only eating once a day, sometimes twice but I pay for it.

I haven't seen the official report from Dr. Tinkle. He is sending it to me. I am very curious as to what it says. I am assuming that he is diagnosing me with the hypermobile type as he has said that I am definately hypermobile.

[Joann]

Kris, it sounds like you have some great doctors who are really helping and listening to you. I still can't believe how quickly you have been able to get some diagnosis. I hope you are able to get treatment that helps you as quickly.

It sounds as if you are frustrated and I can understand that, it seems like it is a very slow process. Hang in there.

I have to say I hope I find some doctors that are like yours.

[Kris4444]

I do have some great doctors but it took me a long time to find them. Let's not forget that all of this started when I was just a kid. IMy IBS and migranes started at 13. I was diagnosed with Fibromyalgia at 19. I blew two lumbar discs on delivery of my first child at 24. I have severe arthritis of the spine as well as DDD and stenosis since I was in my late 20's early 30's. I'm 41 now. The EBV just made everything worse in 2008/09 and it's been a downhill struggle since. The immunologist did blood work a few weeks ago and my EBV titers are STILL elevated at over 6x's what they should be and my IgG's are very low. We are discussing antivirals and IVIG type therapy. I had to have a pneumonia vaccine to see if that would stimulate my immune system. She wants to wait and do blood work in 6 weeks and go from there.

There is a lot going on. My biggest struggle right now is with digestion and weight gain. I'm really hoping they figure this out so I can get back to exercising and so that I have an idea of what to do to help with the slow motility issues.

I hope you find good doctors soon!

[azmusiclover]

Kris, the bloat from gastroparesis is just the worst. I'm thin and then I look like I'm 5-6 months pregnant after I eat. I'm so sorry that you are dealing with that. It really helps me when I eat small amounts, every 2-3 hours. It cuts down on the bloat and it also keeps my stomach moving. I've found the nausea and the gastroparesis is worse when I don't eat.

I'm glad that you are getting some answers. I hear you on the years of searching. I started dealing with all this stuff when I was 14 and now I'm 35. EDS/hypermobility was discussed just in the last couple of years, even though I've had symptoms for years. Makes me angry when I think of the time that was wasted with doctors just thinking I'm a stressed out mom or just tired because I have 3 kids, and those 3 kids have extra needs! I'm happy to be moving forward and I am happy to see that you are too.

Good luck on the stomach emptying test. I'll be curious to see your results.

[Kris4444]

Thanks for the encouragement. I don't know what to think about GP as most people who have it are thin from diarreah and vomiting. I am gaining weight like crazy and no matter what I do I can't get it to come off. I had taken 30 days off of work, joined Weight Watchers and worked out daily and lost NOTHING. I have severe colonic inertia and I'm on a ton of medications. Who knows.

[azmusiclover]

I have a couple of family members who also have GP and they are not thin. They also have a terrible time getting the weight off. They are on medications for other things and I think that is why they can't lose. Side effects just stink

[Kris4444]

I got my report from Dr. Tinkle. My beighton score was 7/9 and my diagnosis is hypermobile type III.

[comfortzone]

I have been a Dr. T patient for a few years now with only annual visits - not since he's in Chicagoland though ... that would be this summer but I never made the appt. Finances are sucky now.

I love his ability to cut through BS like nobody's business even to the point of rather insulting other clinicians during our appt. He'll breeze through the studies I've had done at other big medical centers and say ALL the things I've been thinking unprompted ... I want to think of him as "The Shredder" -

He'll say, 'why hasn't anybody followed up on this? why is this study showing this oxygen level? what is going on that no one cares to do something about this too?' On and on - to the point I have to defend mildly saying my doctors do care and are skilled - just not as fast in the doing part of things - I have to stay on them. He's so not impressed with my team that I carefully put together - it seems doctors have to earn his trust and belief that they have our backs.

So I'm up to one year since seeing him last and my team of docs are still not done with all he wanted done - some things I haven't even mentioned to them yet .... because it just takes time -

Anyway for what it's worth he's a good man - and seems very honest and straightforward - he's got little time or patience for bad patient care provided by other doctors..... funny how every single thing I've read on my studies that alarmed me - but was ignored by the docs who ordered the tests - truly alarmed Dr. T too - so of course I like the way he thinks LOL....

If your care providers show they are at least trying - and have follow through on results you obtain with further diagnostics or a treatment plan - he will give them the pass - or tell you who you might best be replacing. It's great to educate him as well as to who IS on the ball on your team - who IS open to EDS specific treatment regimens - so he learns who he can trust as doing a good job ... so many people see him from afar - it's helpful to build a network of on the ball docs for us...

[Kris4444]

now what- I really liked him too. He wanted to know why the immunologist wouldn't do a bone marrow to test for MCAS. He thinks it should be done even though my tryptase levels were normal. My flushing is very dramatic, I showed him pictures.

I have to make an appointment to see his physical therapist and then do the GP test. He didn't mention another appointment or where I go from here. That's the only thing I didn't like was that there wasnt any direction past the two things I mentioned. He did say he wanted to keep working with my rheumatologist so maybe that is why he didn't say anything about continued treatment.

[comfortzone]

I'm not 'in the know' as to who he has with him in Chicago office ~ meaning who his main nurse or genetic counselor is that takes calls etc...when patients have concerns/questions. But it's a fine line he walks as consulting physician vs 'main' personal EDS doctor for you. I don't really even know if it is defined. So you have to 'use' him to suit your needs and follow your gut. So if you need to speak with him or get clarification you just have initiate that and do it. And keep on task to get your needs met. As far as follow up - he will either tell you in the dictation that gets sent to you ~ like 'follow-up as needed' or in 6 months etc... it will usually say in the discharge summary. It's not an easy job to keep hammering away at scheduling the tests - getting the results to him or making sure the test facility does that - doing the PT thing as asked ~ and making sure you understand what the relationship will be between your rheumie and he for your best health. So bottom line I'd go with your gut - take what's helpful - discard what's not - and do not get discouraged if things take awhile....and call and speak with his 'right hand person' whoever that is at the new facility so you feel in control and knowledgeable about what your plan of care is. I saw him on his last working day at the old facility in OH - and that was one tired man. I hope he feels better these days since the move - his help on my path has been invaluable and I don't think he even knows that!

[Kris4444]

Thank you. I emailed him and he responded. I like the direction this is taking. I'm glad that I now know where my GI issues came from.

[ukwildcat]

I saw Dr. Neilson at children's hospital in OH yesterday. I was dx with EDS with a beighton score of 7 out of 9. He is sending me to PT, pain management, and RA doctor. However, we didn't think about it till we got into car that he didn't mention a follow up appointment with him(Neilson). I have a call into the genetic counselor with questions I had after the appt. I always have more questions after I have a while to think about and process the information. Funny I get on forum and read the post and Kris444 had same question about follow up with Dr. Tinkle. Appointment was interesting finding out how EDS is related to pots, GI problems and my space orientation(why I am always tripping on air, running into walls and hitting my head on things). Neilson said I was unusual in that my hands are not as affected as my feet and my large joints(shoulders, hips, neck, back and knees). He said most people have affects of EDS in hands first. I am excited to finally have a dx and start the process of feeling better hopefully. I cant wait to start Pt. I have high hopes this will greatly improve how I feel. Question-does anyone know why I'm being sent to RA doctor? I know it is hypermobility and RA doctors work with that but if dx with EDS already why are many people sent to RA doctors too.

[Kris4444]

Ukwildcat-sounds like we have a lot in common. I'm glad that they have a treatment plan for you. I emailed my doctor and he did say I should see him on a regular basis. I'll have to call to find it how often that is.

[issie]

We get arthritis at an early age. Not usually RA, but osteo. If you can do things to prevent it at an earlier age --the better it will be for you and your pain factor as you age.

Issie