Hello everyone. Sorry it's been so long. I hardly get on the computer anymore. I was browsing around a little bit, trying to get somewhat updated on how everyone is doing.
I have some news for you guys. I went to see a rheumetologist (sp?) and was tested for pretty much everything. NOTHING. Next, I went in for my colonoscopy and endoscopy. Nothing, yet again. No hiatal hernia, no colitis, nada, ziltch, zero.
I still couldn't figure out what's going on with me. Why these sudden food intolerances and sensitivities to everything, including meds?
Well, just a couple of weeks ago, a friend of mine ran into someone with the same mysterious illness. Well, it's not a mystery for her, at least, not any more. She was diagnosed with something called Postural Orthostatic Tachycardia Syndrome. Here is a list of some of the symptoms...
Tachycardia.....Palpitations.....dizziness.....lightheadedness.....tremulousness.....shortness of breath.....diarrhea.....food sensitivities (especially to gluten and dairy).....chemical sensitivities (including needing smaller doses of meds than most).....loss of sweat.....feeling of detachment of surroundings.....chest discomfort or pain.....fatigue..... headache/migranes.....feeling cold all over.....cold hands and feet.... chills....generalized weakness.....light sensitivity.....noise sensitivity..... nausea.....swollen lymph nodes
These are some of the symptoms. I named off most of the ones I have. There are a couple of more.
Has anyone ever heard of this illness? Can I still be a part of the group even though I found out I don't have colitis?
Much love
Arlene
The update
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Arlene
- Little Blue Penguin
- Posts: 49
- Joined: Sat May 28, 2005 8:58 am
- Location: St Louis (Scott AFB)
- Contact:
The update
Hope is a waking dream.
-Aristotle
-Aristotle
Hi Arlene!
So good to hear from you. I've been wondering what you've been up to.
I have heard of this condition but did not know that there were food intolerances associated with it. Do you have any specific info on that? I'd be interested to learn more. I wonder if this might fit Tessa's problems.
That's interesting that your colonoscopy was normal this time. I assume it showed MC the last time. It has been documented that the MC does go away after a period of time on diet, that the colonoscopy reverts to normal. Of course you can still be part of this group! We are one big family, not to mention a longterm research project for learning about the twists and turns that MC takes.
Anyway, how are you planning to treat this problem? I'd love to hear more.
Love,
Polly
P.S. I will be having my second colonoscopy in a few weeks and fully expect the MC to be gone now, after almost 4 years of dietary management. I'll keep everyone posted, of course.
So good to hear from you. I've been wondering what you've been up to.
I have heard of this condition but did not know that there were food intolerances associated with it. Do you have any specific info on that? I'd be interested to learn more. I wonder if this might fit Tessa's problems.
That's interesting that your colonoscopy was normal this time. I assume it showed MC the last time. It has been documented that the MC does go away after a period of time on diet, that the colonoscopy reverts to normal. Of course you can still be part of this group! We are one big family, not to mention a longterm research project for learning about the twists and turns that MC takes.
Anyway, how are you planning to treat this problem? I'd love to hear more.
Love,
Polly
P.S. I will be having my second colonoscopy in a few weeks and fully expect the MC to be gone now, after almost 4 years of dietary management. I'll keep everyone posted, of course.
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Arlene
- Little Blue Penguin
- Posts: 49
- Joined: Sat May 28, 2005 8:58 am
- Location: St Louis (Scott AFB)
- Contact:
HI POLLY!
I'm glad to hear from you, Polly. There is a website, hopefully it's okay to post it... it's www.potsplace.com . It has all the latest info on symptoms and links to research on the problem. It also, lists illnesses that can cause P.O.T.S. and what you can do to manage the problem.
I was self diagnosed, especially because all the dietary changes helped and I seemed to fit the bill. Yep, I did a Wayne. HA. Hi, Wayne.
I really didn't want to go through the colonoscopy and endoscopy. With all the symptoms I was having, which was very much like my neighbors, I assumed I had MC. Plus the gene testing came back positive that I could develop MC. That was why I thought I had it.
I was incredibly sick after the procedure. I don't think the anesthesia settled very well with me. I told them that I was sensitive to meds, but I don't think he cut back on them.
I hope you help figure out what's going on with Tessa. If she does have it, there's not a whole lot you can do for it. If it's caused by a primary condition, depending on what it is, you might be able to treat that condition and POTS might go away.
Kind of a coincidence isn't it? POTS--Postural Orthostatic Tachycardia Syndrome? HA Especially with us being the Potty people.
Much love
Arlene
I was self diagnosed, especially because all the dietary changes helped and I seemed to fit the bill. Yep, I did a Wayne. HA. Hi, Wayne.
I really didn't want to go through the colonoscopy and endoscopy. With all the symptoms I was having, which was very much like my neighbors, I assumed I had MC. Plus the gene testing came back positive that I could develop MC. That was why I thought I had it. I was incredibly sick after the procedure. I don't think the anesthesia settled very well with me. I told them that I was sensitive to meds, but I don't think he cut back on them.
I hope you help figure out what's going on with Tessa. If she does have it, there's not a whole lot you can do for it. If it's caused by a primary condition, depending on what it is, you might be able to treat that condition and POTS might go away.
Kind of a coincidence isn't it? POTS--Postural Orthostatic Tachycardia Syndrome? HA Especially with us being the Potty people.
Much love
Arlene
Hope is a waking dream.
-Aristotle
-Aristotle
Hi Arlene,
It's good to see you posting again. Certainly, as Polly mentiioned, you are always welcome here. We appreciate the opportunity to learn from your findings.
POTS is an interesting syndrome, isn't it. It's primarily a heart/blood pressure issue, and is diagnosed/defined by a heart rate increase of a minimum of 30 bpm, upon rising from a prone position.
I couldn't find a mention of diarrhea, per se, in the symptoms, but apparently bloating, nausea, and sore intestines are common. The site you listed does mention that many patients develop IBS, which, of course, would certainly involve diarrhea.
POTS is not a unique disease, but rather a collection of symptoms that has been arbitrarily labeled as Postural Orthostatic Tachycardia Syndrome. I suspect that most of us have experienced many/most of the symptoms of POTS at various times, particularly during severe MC reactions, but for most of us, it's not a persistent issue, (thank goodness).
Here's another definition of POTS, and a comparison with Chronic Fatigue Syndrome, (CFS):
http://www.nymc.edu/fhp/centers/syncope/POTS.htm
This site has some interesting charts on heart rate and blood pressure, which clearly show what happens with POTS patients. It also mentions the problem with swelling of the lower extremities, and purplish discoloration of the calf, and presumably, the foot and ankle. Do you experience this discoloration and swelling of the lower leg, upon rising? I would think that the discoloration would be a pretty obvious symptom.
If you have this syndrome, I certainly hope that you have a mild case of it.
on the self-diagnosis. Sometimes we have no choice, when the doctors strike out. LOL.
Love,
Wayne
It's good to see you posting again. Certainly, as Polly mentiioned, you are always welcome here. We appreciate the opportunity to learn from your findings.
POTS is an interesting syndrome, isn't it. It's primarily a heart/blood pressure issue, and is diagnosed/defined by a heart rate increase of a minimum of 30 bpm, upon rising from a prone position.
I couldn't find a mention of diarrhea, per se, in the symptoms, but apparently bloating, nausea, and sore intestines are common. The site you listed does mention that many patients develop IBS, which, of course, would certainly involve diarrhea.
POTS is not a unique disease, but rather a collection of symptoms that has been arbitrarily labeled as Postural Orthostatic Tachycardia Syndrome. I suspect that most of us have experienced many/most of the symptoms of POTS at various times, particularly during severe MC reactions, but for most of us, it's not a persistent issue, (thank goodness).
Here's another definition of POTS, and a comparison with Chronic Fatigue Syndrome, (CFS):
http://www.nymc.edu/fhp/centers/syncope/POTS.htm
This site has some interesting charts on heart rate and blood pressure, which clearly show what happens with POTS patients. It also mentions the problem with swelling of the lower extremities, and purplish discoloration of the calf, and presumably, the foot and ankle. Do you experience this discoloration and swelling of the lower leg, upon rising? I would think that the discoloration would be a pretty obvious symptom.
If you have this syndrome, I certainly hope that you have a mild case of it.
on the self-diagnosis. Sometimes we have no choice, when the doctors strike out. LOL.Love,
Wayne
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Arlene. It's so good to hear from you again! I have a question about your colonoscopy results. Did you have biopsies; and, if yes, were they read by a pathologist who is expert in digestive diseases? The reason I ask is that the first pathologist who read my slides missed the LC diagnosis. It was only after having them sent to an expert that the diagnosis was made.
Also I find some of the POTS symptoms very interesting, particularly the one about loss of sweat. That is one of my symptoms that developed around the time my diarrhea went into remission. I mentioned it to my PCP but he didn't seem to place any importance on it.
It's good to have you back, Arlene, and please do stop by for visits!
Love, Carrie
Also I find some of the POTS symptoms very interesting, particularly the one about loss of sweat. That is one of my symptoms that developed around the time my diarrhea went into remission. I mentioned it to my PCP but he didn't seem to place any importance on it.
It's good to have you back, Arlene, and please do stop by for visits!
Love, Carrie
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Arlene
- Little Blue Penguin
- Posts: 49
- Joined: Sat May 28, 2005 8:58 am
- Location: St Louis (Scott AFB)
- Contact:
Hi Carrie.
I thought about asking for a second opinion. But from what I understand, the lab is supposed to be experienced with colitis. What would it hurt for them to send it some where else? Right?
Thanks, Carrie. I think I will do just that.
Much love
Arlene
PS Glad to be back. Missed you guys.
I thought about asking for a second opinion. But from what I understand, the lab is supposed to be experienced with colitis. What would it hurt for them to send it some where else? Right?
Thanks, Carrie. I think I will do just that.
Much love
Arlene
PS Glad to be back. Missed you guys.
Hope is a waking dream.
-Aristotle
-Aristotle