Miriam Poorman-Knox

Well it makes me think that there is something wrong with your alignment. That would affect your knees and ankles. Since your back was injured, and its never just a fracture there are muscle contusions, bleeds and other secondary injuries. A "clicking" knee is not good that is bone to bone. If it were me, I would find out as much as possible about BOTH knees and ankles. That way you will know if there is trouble brewing on the other side. I really would bite the bullet and do it. Because as you ambulate now you are making the other leg support more and it will wear it out. I also think you should be doing exercises in the pool. That takes all weight off the joints. Good luck. Miriam

This happened to me last week. I was sure I had pancreatitis. My husband a doc said that when you wake up in the middle of the night like that its usually an ulcer. Since I knew they would admit me if I went to ER he brought me some stuff for ulcer and it works. It still bothers me occasionally. A thought. Miriam

Hashimotos is very common in Pots/ Dysautonomia. I can't read all the long post, but the gyst is that there are many theories. I have had Hashimotos for a long time and have been getting the appropriate tests throughout. M

Tea,

I had a small bowel obstruction on Election day. Sadly I required a very long surgery. I am so glad that you were able to poo poo that.!! BTW I suggest you ask your doc if they expect that this may happen again. I have had 2 more, But they cannot do more surgery because of adhesions. I must wait it out and then blow it out!!!!!!!!!! My house qualifies as a toxic waste dump......

As for your son's graduation. Perhaps someone could video it and the two of you could sit and watch it together. Congratulations on your son graduation. It does make us smile doesn't it.

Peace... Miriam

Tea----

I sometimes think of the jetsons, need to go back to the space center to get powered up. Wierd but possible... M

I will be in Oahu for about 2 months taking care of grandchildren. If anyone is there and wants to perhaps we coulds get together. Miriam

I take it every day. I can't combine it w/mirapex (restless legs) it helps alot. Good luck M

Thats what I mean. She didn''t have to do the same chores. And has ALL the classic symptoms of OI. At least she had the support to be able to go at her pace. Having one child, I have found in older (70- ^) people. Many had c-sections.

]I have been thinking about this for awhile. Started to do research, then got ARDS and 5 years later I remembered.

They were hospitalized for depression, or psych. reasons.

Here is my theory. I will mostly use female terms--rest assured I mean both. My experiences, observations though are of women. I was born in 1955. I remember alot of my friends moms who slept alot, would fall had trouble in the sun...... I remember some of them going to the hospital for a couple weeks. No one visited. They came home and things were the same. I think that before we knew anything about this or MANY other diagnosis were in a psych unit in the 50-60 and 70's. These friends would be at someone elses home for meals etc. Other moms were supportive of them. Sent food. Their children (me) to clean their house.

MAybe no correlation at all, I do remember a few of these peoples husbands would not treat them well and were angry because they came home from work at the plant and there was no dinner. No clean clothes, etc.

Since we know it can be genetic. My dad was a string bean. He had problems with dizziness. Now we didn't discuss this but I always have been an observer. I like just watching people, you pick up alot of things.

Thats my thought for the day....... Miriam

What Tea said.!!! M

Absolutely. We all are suferring from a loss of dreams.........for our lives, careers, children. I would worry if anger wasn't. I think in many ways we are spending our lives in constant negotiations with ourselves first......Docs etc.... and others. The important thing is to have a method of releasing the anger, depression, loss. Like EM Zen , prayer, meditating. And it is OK to be Pi__ed. I got nothin. M

My analogy is of a broken leg. People ask "how is it ?" Its better (those drugs don't hurt either). After the cast itch passes they ask how is it ??? Its alot better ( those drugs don't hurt either)............ You get it. We are conditioned as a former "Catholic school girl" this is forever part of the girl. Even ordained as different denomination, still Catholic school girl. !!!!!!!!!!!!!! M

Endure,

You are my new hero. My daughter went to university in Greece and spent time in Turkey. When we went for her graduation I was terrified that I would need care. So, I prayed instead of sending a worried reply. I Do know of some work in this field. When you get home e-mail me and I will get the info to you. Miriam

Do you all realize that we could do History and interviews for patients and probably come up with the top 3 things to check for???? Just a thought. M

Sounds like an "aura". If you are a migrane customer, this is a reward given to some for no additional fee. !!!!!!!!!! Could also be part of masto.

Its

everywhere!!!!!! M

Firewatcher,

A small clarification. While many students in medicine do know which field is for them in the "early years". During residency the required rotations do indeed teach about other diagnoses etc... The point is to find a PCP who knows pots and you. Late. M

I have ALWAYS felt them even before I had the onset of full fledeged Pots. Uncomfortable and scarry...yes. You do get used to it though. M

Find one that you trust and knows Pots.(not mensa but0 and have them as your go to person. This is so important. If a rheumy told me I have fibro, which btw is encompassed symptom wise in Pots. You have fibro................. Good luck M

Perhaps this is your new normal..????? You may have been in remission. Now breathe, and start the cream and other helpful things and work for another one. Peace Miriam

Hi,

What meds are you taking? I gained 50 lbs on mirapex. Sometimes we need to accept that the medications will be a priority. That doesn't mean that you should stop working out. It is o.k. Keep in touch with your doctor. Mirapex works for me. Although there are many different medications that can cause this. P.S. watch whAT YOU DRINK SUGAR, etc. Miriam

Doing the salt/vitamin for LYME.. is that for Lyme which you state that you have. For everything that works for a few more cannot use that under any circumstances. M

Tea.......... Well Put....... AMEN M

Maybe I am perceiving this wrong, but we need to step back. Remember that this is a syndrome thus by the diagnosis there is something else. Cardiomyopathy is another issue. For those who "only" have pots and nothing else............yeah !!!!! Enjoy. The problem is that it does take time and a bit of luck to find someone who can be our miracle workers.

So, if they know the who, what, when, where and why of this,........nice. Miriam

I'm 53 and was diagnosed in 2003-4? Miriam

I was checked for hepatitis like 4 times due to high liver enzymes....I believe mine was related to the medictions I had taken as I don't metabolize them correctly. My billy tot and billy ruben were high, and my urine was a lovely shade of brown. Miriam what is NASH?

Suzy

Non-Alcoholic Steado Hepatitis. I have this. It can be a result of meds or other isues that don't include alchohol. You can google it. I see "liver dude" and I think it important to f/u on. Its different than other hepatitises. Not contageous.... Sorry about spelling only 1 cup of coffee. M