Kris4444

I have an appointment with the physical therapist that sees Dr. Tinkle's patients on May 9th. I am hoping that they will have some suggestions and can set me up with some braces and or support.

I bought new shoes, expensive ones that have added arch support. I still think I need to wear my custom orthodics. I am going to try that.

I fell off Soulie today, well I actually didn't quite make it on to fall off, happened at the mounting block lol, tarp, wind, spring, enough said. I think I'm ok, got on and rode anyway like I always would. I think I would have managed to get myself on if I wasn't so out of shape and fat. Oh well. Just another thing to deal with.

Well that doesn't sound good at all. I have extreme bloating as well and weight gain which is uncommon from what I understand. I caught a glimpse of me riding my horse today and I looked like a pregnant woman....not good. If anything comes out of this I hope they at least put me on a strict diet for a while to see if that helps.

I haven't seen the results but I emailed my doctor and he said that it shows "mild delay, consistant with gastroparesis."

Kind of what I figured. So now I have GP and severe colonic inertia. I guess the entire GI tract is involved. I wonder what if anything the GI doc will do for this?

When I took my 30 day medical leave I exercised daily. I have always had shin splints when I have taken time off from exercising. As usual, they got better as time went on but the pain in the tops of my feet persisted. I thought perhaps it was time for a new pair of running shoes.

When I went back to work it was during the busy season and I didn't get a chance to do much exercise. I am back to just WALKING now with my hubby. We have been going every night. It is our usual 2 mile walk to "the mansion" and back. Still dealing with vertigo afterward but it's nice to get out. Anyway, we bought new shoes and I have walked in them several times now. Last night the pain was INTENSE. It feels like the tendons are stuck to the bone if that makes any sense.

My calves are very tight all the time. I have always been a very physical person, running, riding. Do you think this has anything to do with the EDS and connective tissue or am I just fat and out of shape?

Thanks!

Psalm what is SFN? I also have Fibro and get the lupus rash as you can see in my picture. I have UTCD...the plaquinel helped me with rashes too.

Actually it HAS helped me with the autoimmune aspect of things. That's why I've been on it so long. I believe the eye exam is to check for macular degeneration.

Issie I have been on Plaquinel 200 mgs twice a day for years. I know it has helped with the weird skin rashes and things. I have a special eye test done once a year. So far no problems.

Hi Hope-yes she prescribed the 1 gram dosage twice a day for 10 days then one pill a day doorv a month. Then she wants me to stop taking them for a while and only go back on when I feel that my EBV is reactivating. She said this is the only drug for EBV and she does not want me to build up a tolerance to it.

Hi Chaos - I believe it was my IgG total that needs to be under 700 and I'm 725. She said the closer to 600 you get the better to qualify for the IVIG. If my system responds properly to the pneumonia vaccine then my IgG's will have gone up.

She really stressed that the IVIG would make me feel so much better. What ***** is that you have to do it for the rest of your life or you will go back to feeling terrible again. That is why insurance is hesitant to ok it. It's costs them around $5,000 a treatment I guess...

Thank you. I hope that we are on the right track. I started Valtrex today for the chronic EBV. I still feel that the EBV is what started all of this. I am holding out hope that this will make things better. I know it's bigger than just EBV now but I'm still hoping...

They Rheumy was ok with what the EDS doctor and Immunologist have diagnosed. He said now that he has seen me and spoken to me in person that he wants to contact the EDS doctor to discuss my diagnosis' over the phone rather than exchanging emails like they had been.

I brought my husband with me to the immunologist so that he could meet her and maybe better understand her treatment and what it is that I'm going through as he seemed a bit reluctant to buy into anything we are trying to do. I also brought pictures of the flushing after exercising so she can see that her current treatment of drugs is not working for me. We spoke for quite a while and are going to do several things differently.:

1. ALL of the doctors agree that I am on so much medication right now that it's difficult to figure out what is helping and what is just making my symptoms worse. After talking to the immuno today we decided to start weaning me off the Pristiq which is an SNRI that I take that helps with my colonic inertia. Having high NE and taking an SNRI has the potential to make my flushing worse when I exercise. The goal is to get off of it completely just to see if the worst of the symptoms (flushing and terrible vertigo) get better when i exercise. Unfortunately it may make me get to the point where I have to do bowel preps on a regular basis. I can always go back on but I need to know if it's making the hyper pots stuff worse.

2. Get off the Losartan. I take this for my Raynaud's attacks and the immuno believes that it may also intensify the flushing. I am currently taking it twice a day. Now that spring is here I don't need to take it as often for the Raynaud's so I will cut that one down to once a day. As long as my bp doesn't rise I may be able to get off of it completely.

3. She is starting me on Valtrex immediately for the chronic EBV. This may help with the terrible fatigue.

4. We spoke more about IVIG therapy. She informed me that there is a protocol that they have to follow in order for insurance to cover it. My IgG's have to be less than 700. Mine are 725 so that makes me borderline. She said that she is going to take blood again next week to see what the pneumonia vaccine did for me. She said that blood work is really just a snap shot in time and that the second that mine goes down closer to 600 she will submit my info to insurance for IVIG. She really feels that this will make me feel so much better.

5. We are going to continue on the Xyzal and Singulair for now and see if her meds have a better chance of working once I get off some of the medications that can cause flushing.

I was dissappointed that she is still so against a diagnosis or treatment or testing for MCAS. She still holds true to the tryptase levels being low. She said regardless that my mast cells are out of control but they are "twitchy" not overproducing. I asked about GastroCom and she said I could try it if I want but that she doesn't think it will help me.

I am willing to try her plan and see if it works.

Maybe the doctor is being conservative because of my colon issues? Antihistamines can make constipation worse. She chose Xyzal because it's supposed to be less constipating. The Singulair twice a day was too much for me. I felt like I was breathing fire I was so dried out.

I will be interested to hear what she has to say on Saturday.

Thanks SpinnyC. So even a bone marrow may show up negative?

I wonder if she would just try me on GastroCom to see if it works?

I am considering going off the SNRI I'm on for constipation to see if my NE levels go down and the flushing gets better.

I do take Prevacid for Gerd.

Yes I agree it's a major part of my illness. I also miss being fit. Being overweight and not able to lose is making everything worse.

Hi Issie,

I started the meds at the end of February. I take Xyzal and Singulair twice a day as well as Qnasal which is a nasal spray.

I really didn't push anything. All it takes is a little exercise to set it off.

Thank you. Love your name! I was on a paint show team as a kid! (I am assuming that is what your name refers to?)

She did say when i called the office before meeting her that she sends people out to another doctor but she went on and on about how she doesn't think that it's necessary because the blood work doesn't reflect MCAS/MCAD.

So the meds the immunologist has put me on are not changing anything. I went back to work in the heart of tax season and wasn't able to exercise much. I have an appointment this Saturday with her so I wanted to make another effort at exercising to see if I'm still flushing on the meds like I was when I was on medical leave.

My husband and I went for a walk. I jogged a little in between. As usual, when I slowed down all heck broke loose, vertigo, hard to breathe, severe flushing. It was cold out but I had sweat pants and a t-shirt under my sweat shirt. When I got home and stopped moving completely the whole house was spinning. Looking back now I realize I probably should have used my epi-pen.

This morning I awoke to find my face and neck covered in hives. I have cold urticaria. The meds are supposed to help that too but clearly they are not.

My EDS doctor thinks that my immunologist should send me for a bone marrow for MCAS/MCAD but the immunologist feels that I don't have either because my tryptase levels are normal. I don't want to come off as telling her how to do her job but she did tell me that she knew exactly what was wrong with me and that she could help me. She said I would be feeling great in only two weeks. Well nothing has changed. I'm not ready to give up on her yet. I am willing to hear what other options I have. I want off the meds though, they are worthless.

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.

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.

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.

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

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.

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!

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.

Kelly the GI doctor copied me on an email between himself and the pathologist. The pathologist said that yes there were "occasional" mast cells seen but they don't know what the parameters were to say if there were too many. They said that we are all exposed to allergens so it's not uncommon to find them in a GI biopsy.