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In Tears After Endo Visit. Says It's Not Pheo. Now What?


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Joann I am noticing a difference for the better. i have been working out every day and I have been keeping track of my bp and hr. Every day since starting the clonidine twice a day, my bp and hr have come down after exercise. Today I didn't get as flushed and had no dizziness afterward like I usually do It IS helping me. I am stating it three times a day tomorrow on the advice of my GP that I saw on Friday. He said the worst thing that may happen is I find myself on the floor and since I'm home from work I guess that would be ok as long as it's not when I'm working out on the treadmill!

Let me know if you try it and how it works for you! Wishing you the best! :)

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Kris, I'm trying to get the whole picture.

The part involving Mayo is a bit confusing, as they're very capable of dx pots. But because they prescribed Clonodine, and used pots in your dx code, am trying to give you an idea to tell for certain if you have pots.

Buy a heart rate monitor/BP cuff. Most machines measure most. Take you pulse when you wake up in the morning and still laying in bed. Right down the Pulse and BP, time and postural state,

Get out of bed and walk around for 20 minutes without sitting. Take another reading, and record the responses, and note time and posture. There should be an increase of at least 30 heart beats after standing 20 minutes.

When you're sitting and reading, etc...Take measurements again.

Do this throughout the day. Most importantly from a sitting or supine position (take a reading), stand up and walk around or just stand for twenty minutes and take another reading. There needs to be an increase of 30 heartrate beats difference from sitting to standing, or 30 beats difference from supine to standing twenty minutes. I'm talking about pulse. If your pulse is 100 sitting, it needs to go to at least 130 after standing/walking for 20 minutes.

If it does not go up 30 beats in twenty minutes, you don't have pots. It's that simple. At least you could rule out pots as your dx.

Kitt,

It's been my experience that nothing with Pots is ever that simple :)

I've never heard of that method of testing for Pots. A Poor Man's Tilt table test which is what docs do when they don't have immediate access to a TTT, is much more structured than this and involves standing perfectly still. So that would involve taking vitals while supine (being still for a minimum of 10 minutes), then standing perfectly still and repeating vitals at 1 min, 3 mins, 5 mins, etc. I've never gone beyond 5 minutes because they always stop me due to symptoms and bp starting to drop, so I'm not sure how often they check after that. If you are moving around or walking for 20 mins (if someone is capable of that), it could definitely skew the results. I know in my case, if I keep moving around, I can remain upright longer because the constant motion slows the blood pooling in my legs (potentially lessening the need for my hr to compensate). So, while the method you describe may indeed show the 30 bpm increase (between the two readings of supine and 20 mins) in Pots patients, the lack of it would not definitively rule out Pots or necessarily give a true picture of what is happening. There are all kinds of fluctuations reported by Pots patients, especially when you are able to engage counter-maneuvers. The hr may be well over the 30 bpm increase immediately on standing, but it could dip down below the 30 when checked at 20 mins, only to shoot back up again later.

Kris,

I'm glad you have noticed some improvement with the med. I hope it continues :)

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try checking out dr. frank lichtenberger in statesville nc. He's an allergist and biologist specializing in mast cells.

He thinks outside the box and can refer you in different directions. You might email him, he answers back.

He might have a connection, he used to work for a research fellowship for an impressive government thinktank.

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Spinner - thanks for the info. It's amazing to me how few and far between these doctors are!

Peace - thanks for the well wishes. Taking the clonidine three times a day now. I feel really tired. Still having major flushing issues with exercise.

Kitt - I did what you suggested and I did have an increase upon standing of 31. I took my medicine and repeated the test later with adj increase of only 16. So at least the meds are working.

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Moving around and walking makes my hr go down. It's when I stand still and don't move that I have the increase in hr. and my bp goes up too when I first stand. Some of the docs say that the increase should be within the first 10 minutes. But, if you do a TTT with cardio - they do the test for 45 minutes and it will pick up if there is a drop that happens later with time. I've had both types done and the one that was 45 min. was much more telling.

Issie

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Hi Kris,

Several thoughts: I have the flushing too. Do you also have problems with full body temperature regulation? I deal with both of these. My understanding is that this is all linked to dysautonomia and the ANS's malfunctions. I have also read that bursts of adrenaline are what specifically cause the flushing.

You mentioned gut issues. One of the subsystems of the ANS is the ENS or Enteric Nervous System, which helps control the GI tract. Often food moves through the stomach more slowly than normal.

I'm curious about "the strange vibrating feeling" that wakes you at night. I experience what I term "body earthquakes." I used to wake up really groggy to this odd sensation of my upper body shaking. For other reasons, my docs started me on Gabapentin. Once on that I was more lucid during these occurrences and realized that no I wasn't dreaming this -- my body was actually shaking. Sometimes I shake so hard that it feels like a train is roaring through me. Intense chills often occur before body earthquakes, and after intense ones I have a strong instinctual fear response. On one extreme instance, I lost the ability to move my arms for several minutes afterwards. I have also bitten my tongue. Is this similar at all to your experiences? You're the first person I've met who sounds like she's experienced a similar phenomena.

I've been sent to sleep doctors, neurologists, epileptologists and spent five days in an epilepsy monitoring unit (and then back through the list a second time). No one seemed to have any idea what it is. Panic attacks were even suggested. Despite experiencing body earthquakes nightly, I didn't have one while in the EMU (of course). I think being woken up every couple of hours messed with my sleep cycles enough that they didn't occur. The doc didn't see signs of seizure activity. They concluded that like hypnic jerks (which I also have), my body shakes are a very extreme case of my body getting caught between the worlds of wakefulness and sleep. They've been progressively upping my Gabapentin levels, and the episodes have been drastically reduced. I do wonder if I'm not having them or if I'm just sleeping through them.

I also noticed the posts about Cleveland Clinic. (I go to their autonomic clinic within the cardio department.) The Clinic has a concierge number that you can call to get help with clustering appointments and tests. This is set up specifically so out-of-towners can minimize their travel frequency.

I hope this helps. Please let me know more about your nightly vibrations.

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Kris, taking clonidine did help with my flushing when I started it, when it started it was constant and worsened greatly by things like eating meals (even cold ones), hot drinks or other tiny changes in temperature, like changing the settings of the aircon in the car. The clonidine did reduce the reactivity and general flushing. I'm sure at that stage it was being caused by high norepinephrine levels, as I was also having cold sweats, agitation, tachycardia, diarrhoea etc. The side effects do wear off with time, and in many ways I did feel a lot better on it, I completely lost that wired, shaky feeling I'd had most of my life. I found I needed to take it 4x, as I've always found the effects wear off really quickly for me. The worse side effects for me were dryness issues, but I had sicca beforehand, and these side effects did wear off with time too.

I did find the fatigue, brain fog and general symptoms of cerebral hypoperfusion very difficult to deal with, plus I started to get weird symptoms when taking other drugs with it. Also, it has never helped with the middle of the night flushing episodes I get, even after taking extra at night, I still found myself waking up with my face red, painful and swollen and having to get up and trudge around for 40 mins+.

I'm wondering now if this nocturnal problem is due some additional neurological issue. I know I suffer from sleep paralysis, and also have nocturnal dystonias. I seriously grind my teeth, when I wake up my whole face is twisted into odd grimaces. I used to think this was a reaction to the pain, but now realise it's due to muscle rigidity, which I have all over my body (according to EMG test results). I think there is some connection with catecholemines, this happens at exactly the time in the early morning when levels and body temperature begins to rise and has been made worse by drugs that elevate norepinephrine, as the current bad phase started when I tried nortripytline last year, but it can't be the whole story as I still have these terrible nocturnal flushing episodes after taking clonidine doses which must be working to some extent, as they significantly reduced BP, HR and body temperature.

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Something I'd forgotten, Clonidine used to be used as a diagnostic test for pheochromocytoma, so how you respond to the drug might be indicative.

"One diagnostic test used in the past for a pheochromocytoma is to administer clonidine, a centrally-acting alpha-2 agonist used to treat high blood pressure. Clonidine mimics catecholamines in the brain, causing it to reduce the activity of the sympathetic nerves controlling the adrenal medulla. A healthy adrenal medulla will respond to the clonidine suppression test by reducing catecholamine production; the lack of a response is evidence of pheochromocytoma."

http://en.wikipedia.org/wiki/Pheochromocytoma

Another drug that has consequences in pheochromocytoma is Metoclopramide, it's contraindicated because it has a strong pressor effect in people with the latter. I don't know whether this is something peculiar to pheochromocytoma or hyperadrenergic states in general. What I do know is that I react really badly to it. I was admitted to hospital for a drip after I got really dehydrated last year (due to pregabalin withdrawal), they gave me Metoclopramide intravenously, my pulse rate went through the roof and I nearly passed out, and felt really agitated for hours afterwards. I was taking a large dose of clonidine at the time, and it still had this effect on me.

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Lel - I do have major issues with full body temperature regulation. It's really bad. The worst part is when I get cold and then my body re-warms. I can't seem to get to a normal temp when this happens. My body goes into overdrive and I flush EVERYWHERE, my skin becomes very hot and red, almost purple and then I can't stay awake. It's very scary. So far no one has been able to tell me why. I have had ANS testing and everything (other than the high NE levels) was normal.

As far as the "body earthquakes" (I love this expression as it really does describe how it feels) I have never had it where I couldn't move my arms. It doesn't happen every night but I do take 2 flexeril for sleep, that on top of the clonidine makes me very sleepy so I may be sleeping through these episodes. I know that when they do wake me I do have a feeling of fear, almost like a baby with a startle response, my arms tend to shake and I notice it mostly in my upper body. I have been lucid enough recently to put my hand on my chest and I notice that my heart is pounding pretty hard when this happens.

It sounds as though our issues are very similar. It is discouraging that neither one of us seem to have any answers other than "take this and call me in the morning". I am hoping to get some answers from the immunologist. I want her to look into mast cell and it has been suggested that I have her investigate further into the Epstein-Barr Virus that started this whole thing. Please keep in touch and let me know about any updates with your condition. I will do the same.

Elizabeth - I have read about the pheo and clonidine. So far all I have noticed is a significant improvement in my bp after exercise. The flushing is still as intense. I am trying to figure out a way to post pictures on here so you can see what I'm talking about. I have a photo bucket account and I think that might work. Anyway, I flush in two separate ways. The flushing I have with exercise is raised and welted where the flushing from food or alcohol is not raised, it's flat and very red and hot.

Even with my high NE levels my endo did not want to do a scan for pheo saying that Mayo wasn't impressed enough with the numbers to do it so he doesn't feel it is necessary. He did say "I'm not saying you don't have a tumor, it's possible that you do, but the diagnositcs aren't pointing to it at this time." Gee, I feel MUCH better! He said that I don't present like a person with pheo. (I'm guessing that means because I am overweight and constipated rather than skinny with diarrhea)

I'm really hoping this immunologist has some answers but I'm starting to think this is a dead end road and the only answers I will get is to take another pill. If that is the case and I can get my life back then fine, but I still have a NEED to know what the CAUSE is. I want a name, something to call it. I know that isn't always possible but it helps me mentally to know that it has a name and i can explain it to people who always tell me I don't look sick.

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Hi Kris, my body earthquake episodes are also only in my upper torso, and yes, sometimes my heart races during them. What is the mast cell thing in which your doctor is looking into? I'm not familiar with it. There is so much to learn about this stuff.

Also, you might want to check out the post called "Ever Experienced Something Like This?". Specifically check out ukwildcat's posts on the second page. Her night shakes sound similar to ours.

And oh man, I hear you on the temperature fluctuation thing. Sometimes I'm freezing, so I put on a blanket or two or three. Within a minute I feel like I'm burning up, and where the blanket touches my skin is on fire. Then because of my Raynaud's, my body will be sweating but my feet will feel like a block of ice. How is that possible? Body's are so weird sometimes.

I'll definitely keep you posted. Keep hanging in there!

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Lel - I do have major issues with full body temperature regulation. It's really bad. The worst part is when I get cold and then my body re-warms. I can't seem to get to a normal temp when this happens. My body goes into overdrive and I flush EVERYWHERE, my skin becomes very hot and red, almost purple and then I can't stay awake. It's very scary. So far no one has been able to tell me why. I have had ANS testing and everything (other than the high NE levels) was normal.

Elizabeth - I have read about the pheo and clonidine. So far all I have noticed is a significant improvement in my bp after exercise. The flushing is still as intense. I am trying to figure out a way to post pictures on here so you can see what I'm talking about. I have a photo bucket account and I think that might work. Anyway, I flush in two separate ways. The flushing I have with exercise is raised and welted where the flushing from food or alcohol is not raised, it's flat and very red and hot.

If you have raised norepinephrine, this causes the veins to constrict really seriously, as they do in Raynaud's phenomenon. If blood vessels are constricted, then oxygen supply to the tissue is compromised, and the body then overcompensates by increasing the circulation too much (hyperemia). Normally, this only happens in people who have defective circulation in their peripheries, but if you've got very high catecholemine levels, I guess it can happen all over your skin. Some people with erythromelalgia get it all over their body, not just in their hands/feet I know. High norepinephrine/vasoconstriction also causes your core temp to rise significantly, this can then trigger excess sweating and body temperature to swing too low. My temp regulation has been all over the place since I can remember, although usually too low.

Re. raised patches, I'm not sure it's significant of anything other than you're getting serious hyperperfusion of blood to those areas, it doesn't help tell you why it's happening or necessarily prove it's being caused by histamene release. I get serious swelling on the thermoregulatory zone on my cheeks. These areas are peculiar in that they are controlled by sympathetic vasodilator nerves. Unlike most sympathetic nerves, these work by releasing acetylcholine (and other vasodilatory neuropeptides that aren't known) to reduce body temperature by stimulating significant vasodilation. The only thing known to block sympathetic vasodilator nerves are botox injections. Given that I've tried every single drug there is to try to control my painful flushing (clonidine, 2 different kinds of betablockers, various combination of H1/H2 anti-histamenes, serotonin antagonists, POTS medications etc), I'm going to insist on trying this next.

I've been double checking on pheochromocytoma again too, apparently pallor is usually much more common than flushing with true pheo. If you're not having much joy with clonidine, I wouldn't stay on it for too long as I've found it's really difficult to come off.

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I have hyper pots, eds and most likely mcad (seeing dr. afrin next week). As for worrying about a pheo and wanting a scan to verify yes or no, I understand that part. I had a number of scans, (mibg, etc. cant remember all the names of them) to see If I had a pheo. My norepinephrine levels were only a few numbers away from being able to diagnose a pheo. What I learned through all of this, is really if you have a pheo, your numbers will be way over the dx number 95% of the time. A pheo has very high numbers typically. I remember when I was going through this, it was such a long road that I eventually was wanting a pheo, just so I would have an answer. As for the mayo dx for hyper pots, when I was dx, (dont know if it has changed from a little less than a year) but to be dx with the lab you had done from laying down to standing, what they are looking for is above 1700 norepinephrine. But there is a girl I met while there that has pots as well with flushing experience, and her numbers were not high enough to dx hyper, but yes she still had hyperadrenergic state. It isnt uncommon for regular pots to have higher levels of norepinephrine compared to the general public, but they are lesser than the hyper pots numbers.

As for experiencing flushing with excercise, that is very common with mcad, and really checking your bp and hr after exercise isnt the best time to check them for numbers looking at pots, as it is normal for bp to increase for at least the first 10 mins after exercising. But yes checking your numbers during that just to make sure you are ok is fine. I know you are seeing an immunologist this week which is good. You want to see one that understands mast cells. I saw an immunologist at the mayo while I was there amongst other docstors I saw. He only really knew about mastocytosis an not mcad. Hence my appt. with dr. afrin next week. But even without the official dx it hasnt stopped me from treating myself. Which was the best choice ever. It was also by accident that I had started, but it worked so well. Since there are over the counter histamine blockers, I trie them and was hugely surprised to fiind my "flushing" that I thought was caused by my pots became so much better. And when I did have a big flushing episode I took a benadryl and it helped immensely. and the benadryl an histamine blockers helped headaches, tummy problems, etc. I now am on and have been for awhile histamine blockers, gastrocrom, and benadryl (as needed). If I would have waited for the dx before starting these meds, I would have been living in misery for an extra year an a half. I take gastrocrom and my blockers when I exercise and If I feel flushing coming on I take a benadryl. Diet has been a huge key to flushing episodes as well. I started a gluten free and low histamine diet. My pots doctor and my other docs believe I have mcad, since the meds are working amazing on me, they dont understand it but all they know is my headaches, flushing, diarhea, nausea, vomitting, sensitivities to food, lights, smells are much better. And when I went off my histamine blockers within 2.5 days it all came back full force, and with starting them again they calmed down again. My pots doctor now writes all my rx for pots and mcad.

And for your vibrating. I get that too. Mine happens either at night or in the morning waking up. But I also get it when I believe my bp drops quickly at times upon standing and I get tunnel vision and feel lightheaded and feel a weird feeling in my ears like they need to pop and all of a sudden I feel this shaking in my body, but instead of me actually shaking I am not. I look at my arms and they are still but I feel like I am feeling an earthshake that no one else feels. I have explained that to my doctors and none of them know what it could be or what the casue of it is. I feel kind of ridiculous explaining it but my docs all have learned with me anything is possible. Would be nice to know what it is.

Wish you the best in finding answers. I know the flushing is not fun at all. I still get norepinephrine surges and mcad episodes but some symptoms are a lot better, while some havent gotten better and others have gotten worse. But I would be a lot worse if it werent for my histamnine blockers and benadryl. anyway I have written a novel, sorry. If you have any questions , just ask.

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Hi, Kris,

Im also beyond frustrated but learned from Grubb of an MCAD hemo who will work with ur doctors to tell them which labs to draw.Name is Lawrence Afrin in Charleston, SC. Good luck! Maybe it will help...

I just got a written report from an MD stating that I'm somatizing. I'm enraged; trying to formulate a response that d/n make me sound loonier to him:). I'd loveto see them live w these symptoms!! (flushing, shaking, chills, gi not working, etc.)...

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jrlehnardt - you have been through a lot. I am wasting my time seeing a local immunologist? Should I be seeing someone like Dr. Afrin? My husband and I have been all over, Johns Hopkins in August and now Mayo in January. I am off work and we are struggling financially. More travel seems nuts if there is someone here who can possibly diagnose. I know nothing about this doctor I'm seeing Thursday, only that she is thorough and knows something about mast cell at least.

We have a lot in common with our symptoms. I don't have an official pots diagnosis or EDS but after going to Mayo I am convinced that I have hyper pots and most likely mast cell which would account for all the GI issues and inflammation in my bladder and other organs. I've been doing a ton of my own research and I pray I'm not wrong. My diagnosis of UCTD and Fibromyalgia can definately be mistaken and I could have EDS. I am extremely hypermobile, always have been. I have blown out tendons in my arms, feet, elbows...I appreciate your reply. Thank you!

I'm still having the strange vibrations in my sleep but they don't freak me out anymore now that I know it seems to be common with people who are hyper pots with high levels of NE.

wishing&hoping - thanks for the info. Definately worth looking into other doctors who might be willing to work with my local ones. My rheumatologist was supposed to be looking into this for me but I'm doing the leg work on my own. I will definately use your resource if this doctor I see on Thursday proves not to be helpful. Thanks again!

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jrlehnardt - you have been through a lot. I am wasting my time seeing a local immunologist? Should I be seeing someone like Dr. Afrin? My husband and I have been all over, Johns Hopkins in August and now Mayo in January. I am off work and we are struggling financially. More travel seems nuts if there is someone here who can possibly diagnose. I know nothing about this doctor I'm seeing Thursday, only that she is thorough and knows something about mast cell at least.

We have a lot in common with our symptoms. I don't have an official pots diagnosis or EDS but after going to Mayo I am convinced that I have hyper pots and most likely mast cell which would account for all the GI issues and inflammation in my bladder and other organs. I've been doing a ton of my own research and I pray I'm not wrong. My diagnosis of UCTD and Fibromyalgia can definately be mistaken and I could have EDS. I am extremely hypermobile, always have been. I have blown out tendons in my arms, feet, elbows...I appreciate your reply. Thank you!

I'm still having the strange vibrations in my sleep but they don't freak me out anymore now that I know it seems to be common with people who are hyper pots with high levels of NE.

wishing&hoping - thanks for the info. Definately worth looking into other doctors who might be willing to work with my local ones. My rheumatologist was supposed to be looking into this for me but I'm doing the leg work on my own. I will definately use your resource if this doctor I see on Thursday proves not to be helpful. Thanks again!

You're welcome! i also have severe flushing and "the shakes" in the am!! but d/n have high epi. interesting discussion. clonidine makes me hyper!

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Kriss, Which Mayo did you go to? Dr. Goodman in AZ is RXing GastroCrom to a good many of us. It is a mast cell stablizer. Since so many of us appear to have issues with mast cells and autoimmune issues seem to be a BIG part of the picture - if your immunologist is familiar with MCAS and POTS - it may be of benefit. Although, Dr. Afrin is considered one of the best docs for MCAS. ChristyD's son see's him and maybe you could PM her and get more info on him.

Issie

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Kris- I wouldn't say it is a waste of time. You never know she could be very good. I have an amazing family doctor that had not known anything about pots or eds or mcas but he has been a very important part in my health, so I would still go . PLus with her being local that would be wonderful. If she doesnt know, she still could be amaxing if she is willing to learn. My advice would be to bring a printout of information for her to read about it, it cant hurt. I am in Georgia and had to travel to az to see dr. goodman last year and becasue my pots is still not under controll and parts of it has gotten worse I have to go out and see him again. I lucked out that dr. afrin isnt too far from me, so that is why I am able to see him. But I have learned it helps to see specialist in what I have. I would love to see dr. grubb or another eds doctor eventually but cant cause of finances. My kids have problems with eds too, so that will hopefully happen eventually. But when I was out at the mayo last year and had presented to him about mcas he didnt know about it, so he sent me to a mayo immunologist and they didnt know too much either. But in the last year dr. goodman has learned a lot and willing to help with meds for mcas. So I wouldnt say my appt with the immunologist there was pointless. Its all part of our path.

Yes gi problems have been a huge part of my troubles especially in the last 2 years. and I have had problems with other organs as well mainnly prolapsing. Many of my doctors thought fibromyalgia too, until I saw a rheumatologist and one look at me, and my exam he knew it was eds.

My friend I met at the mayo last year has pots, not hyper and she still gets adrenaline surges, anxiety like attacks. So you could have either. But it is important to know which, as the treatment plan especially with meds, tends to be very different. What works for her doesnt work for me. Certain meds I can't do or get more problems with due to the mast cells. So I have to be very careful of fillers/dyes in meds, vitamins, food,etc. Definitely update us after your appt with the immunologist. I see dr. afrin on monday next week, so very excited about that.

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Yes, I have 5 kids and they all most likely have eds. Two have already been diagnosed, but the doctors think they all have it. We just havent diagnosed them all. My two oldest are having problems, that I never did when I was a kid. Yes I will let you all know how my appt goes. I already know that all my labs he does, will not all be in for 4 weeks (his nurse told me that). Good luck

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We are still trying to figure out how to get me tested for EDS. My rheumy at NW is supposed to have something for me by next week. I found one doctor at a children's hospital who does the testing and treats the disorder but they can't get me in until May. I was really hoping to get this done while I was off work this month but I guess that's not going to happen.

Still hopeful that the immunologist will come up with something brilliant. Now if my stupid colon would go back to working I could feel much better. My rheumy thinks I should wean off the clonidine since it has made the colon issues so bad. I'm not sure it was helping much anyway. The only big difference I've seen is in my bp.

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