Miriam Poorman-Knox

One thing that might be helpful, and I had this when I first began this journey many moons ago, is your pituitary. You could have an ademoma which explaind the thyroid problems we have. Also you don't lactate because of fibroids. There is a blood test that can tell you if your lactose is elevated otherwise need an MRI of Pituitary. Don't let them blow you off. Miriam

It seems to me that this is her doctors responsibility. Once a patient needs a medicine that is not on the formulary--the best and quickest route is your treating physician. Otherwise, I would contact the Arthritis Foundation and ask for their reaearch and info. I was on their board for 10 years and an educator for 5. They will have the info, but it still should be filtered through her treating physician Miriam

The vasculitis is part of potts, the connective tissue part is what makes the small vessels pop. I found this out after they tried a 24 hr BP test and my arms were full of poppes vessels within 5 minutes. This is why the exercise part is so important, the muscles absorb more of the pressure.

My name is Miriam 2. My favorite book istuesdays with morrie, and "prayers from around the world" 3. Favotite movie the big chill------also chocolat 4. favorite things to do play with my 2 grandsons almost4 and 9 mos., MY most favorite spiritual thing was going to the beach--now I can only go where there is a breeze. , learning to knit. Used to quilt. Work as a chaplain at a trauma hospital and have thurs nite stitch and itch. Miss that. I am an ordained minister who spent 10 years as athletic directtor at a large Wi. healthclub, teaching4 classes a day. 5. I too am left handed. I have been married for 30 years. Have pots since my daughter was born in 1978. Diagnosed 2004!!!!!! Something no one here knows--I have questioned my faith it won--but never my calling. I think it made me able to deal with this with faith. And YOU ALL are part of that faith, that I-we will choose thew right docs, know when to ask when to sleep or rest and when to rise up and say NOOOO.

I too had those symptoms. I just got back from Mayo my two weeks of worship!!!!! My sed rate is still elevated as well as my rheumatoid factor. I did have a biopsy in Sept for a breast problem and it showed that my mast cells were involved. The rash is I found out part of vasculitis which is a part of potts. All of your other symptoms have been part of my life too. The main thing that keeps me sane (I THINK) is that I have a core group of support docs, including a therapist who helps to empower me when I am too weak. He only works with people with health issues, that helps. I have seen an endocrinologist and a rheumatologist and both have been helpful, but also knew or learned about pots. So if you go to a new doc take info with you to give to them if they aren't aware. Blessings Miriam

Tearose, Remember we may be disabled but we are not stupid, or lazy or incompetent, or andy other name. Most people who get pots are "overachievers" people who push themselves further longer and harder, because we don't know there is any other way!!!!!! You are a soul that we are blessed to have, especially here where we are at our most vulnerable. I believe that this was a learning experience for you and the rest of us. I do have some suggestions for you of jobs that you may be able to do on your own schedule,time. That doesn't change the fact that you shouldn't be doing this or worrting about this you should be taking care of YOU. I have been battling for disability also. I am a minister/ chaplain and that work is even too much to handle or predict. First appeal, then contact every elected official you can, have your local news station do a story about dysautonomias. And the problem associated with disability. Please know that I will keep you and your family in my prayers. We alone are alone. Together we can make a difference. I believe this. I survived ARDS (acute respiratory distress syndrome) this year- was on life support for 3 weeks. I believe that we all will through the darkness find light. I will share that journey if you like. I will also start talking to docs and others that I know to see if there are any other ideas noty already thought of. Sadly, I remember once talking to someone who was disabled and "looked fine" and thought to myself that. How ashamed I am of myself. I do know that I was so uninformed. Blessings Miriam

Yes, The american academy of physicians that treat pain have issued a statement in the last 6 months, stating that pain is the most under treated disease. Their statement can be found on the internet under medical-- pain. There is a misconception that if docs treat pain that the patient will become "addicted" what dumbasses!!!!! If you truly are in pain you only use what you need---one does not become addicted by mere use. My husband is a doc. A well informed one who has always treated pain as well as other symptoms that patients have had. I would let your doctor know that neurontin is not a "street drug" and its use is varied and it will work on chronic pain only if you have it. There is no reason not to try it. Try and talk him into a 1 month trial. The drugs that we need for depression due to pain NOT being controlled can be more of a problem. I would suggest that you ask your doc to check some sites related to treatment of this, can e-mail me if needed, will send articles. Be firm,and take someone with you if you feel that you aren't able to get your point across clearly. Miriam I re-read your post. Neurontin is used for chronic pain lots---call your pharmacist and ask them to send you in the right direstion, this is probably what he is looking for. Your pharmacist knows alot.....also check the PDR for neurontin uses.

Hi, Sorry you had such a bad experience. We have some friends who are docs in canada and I think your best plan is to keep calling them and having them contact on your behalf. It is a complicated system, DISEASE, and life. Always remember to have your BP checked if you are unsure of leaving- legally they can't discharge you if you still have the same symptoms you came with. Low BP is dangerous!!!!

Hi, I'm Miriam welcome. I too have this symptom. I would check my blood pressure when the headaches start-- you will probably find its low, mine was... Something that might help is to keep a journal of symptoms, that way you can see if there are any patterns that you can see. It helps alot.

THANKS MIRIAM

Thanks I will let you all know how it goes. Miriam

Angela, A QUESTION?????? Would you feel the same if you had diabetis. I too was a dancer and a fitness expert, I started to gain weight. you know how the story goes finally I was diagnosed. GOOD FOR YOU that you were able to go out shopping. Perhaps your friend would really have appreciated the ability to catch up and what a better place than barnes and noble, where you can sit!!!!!!!!!!!!

I feel like passing out even with added meds. I'm confused, and on a longer trip at christmas passed out.

I am going to Mayo from Pit and have had lots of problems flying even with compression garments and gallons of water. Any other suggestions?? I am terrified. This trip I must take alone, although I normally limit my trips to when my husband can accompany me.

Hi, I too had "THE RASH" and went toa dermatologist and rashes are a part of potts,,, some think not loosing enough heat although there are other reasons. I got a cream to use and it works great. Good luck

Ernie You are the man!!!! I am married to a physician (30 years). Ehen I started having problems, they were individually treated. My husband suspected that it was a dysautonomia, but .... I truly believe that you should present the information to local medical societys and residencies if you are near any. The association has wonderful handouts, and if your doc is there you could do from both perspectives!!!!!! I have walked into ER's in different states to get an IV and people have just believed me. Then complimented me for knowing my body. You have a gift--rock on p.s. Igo to Mayo Mon--but didn't know this was genetic?????

I had a situation this summer where I had pneumonia and didn't know it. My husband found me uncounsious and had me transported to the hospital. I was intubated for three weeks, and they can't give the best amount of sodiun during that time. I was lucky and walked out of there. When your friewnd gets better make sure that he gets help for psychosis......because there is also "Post ICU Psychosis" which blows. So having the knowledge that this does happen helps. blessings

MKy name is Miriam I would be happy to talk to you. Miriasm15221@yahoo.com

Hi My mane is Miriam--I too passed out for up to 6 hours at a time and it was unpredictable, I have potts. The most important thing is to stasy on what is prescribed and do some cross training exercise ending with stretching on the floor-so she won't pass out

Mary, I am Miriam and as all pots patients know depression is a part of the SYNDROME and having a special needs child doesn't make it easier. Perhaps if you contact a local college, medical school, or graduate school, there are people who have to do so many hours of therapy, and are looking for patients, this is free. They match you with someone with knowledge about medical, social conditions etc. I did that when I was in seminary, and had so much to offer, and I didn't know I had pots. Also call your churches, there are chaplains and you can be wherever you want with them. Asking your husband to leave seems too easy to me. He has responsibilities to both you and your daughter. Set a schedule for his time, stay in seperate rooms but think and have faith--you have free will and with that free will you will find people with knowledge to help you, and if they can't they will help;;;never lose that faith in yourself my friend, I am, here. Miriam

I go to Mayo Monday for I guess 4 days. I don't know what to expect, can you help. I see Dr. Low. I am flying from Pittsburgh. Flying is not so good to me anymore.