Miriam Poorman-Knox

Donna,

I too put on weight with florinef 50lbs. But it worked, so I had no options or had already tried them. I can only offer one small piece of advice make sure you are ot on any vaso dialators. If you have a doc who was really good and understanding perhaps you could point out that florinef causes wt. gain. Good luck Miriam

This sounds like mastocytosis. I have it. Folks would assume I was angry at them because my face was red. I wasn't aware. Good Luck Miriam

Katherine,

I too have this problem. when I was at mayo the endo explained that for pots patients we need to increase or decrease dosage incremetally. Alternating might work for some, however for me a middle half the increased amount WORKED for years docs tried to increase or decrease too much. Dr Stan also said that the Free T-4 was the most important indicator. That is the amount (for those who don't know) that your body still makes. I would ask your pharm. if there is a middle dose for a month per Dr. Stan then increase. Good luck..... Miriam

i I have been absent for a while. I had gastric bypass surgery 3 weeks ago. I have a liver that is not healthy, and some of my eds have made it worse. So, this really was my only optiop to lose weight quickly. ThatI have lost 35lbs in 2 or more weeks. Not an easy thing to have done. When I am done losing weightI am not having any more surgery, I'll use duct tape.

Had a fabulous surgeon. As usual I was very comlicated and took 33/4 hrs instead of 3/4-1hr. Day by day I get better. My potts is actually for the time being better. Don't know for how long, but will accept the break. Peace to all Miriam

There are many alternative and holistic meds that actually make pots worse. Again how would he know if your flap was open or closed. Scary Miriam

Yes, I did. Had some reactions, still better than influenza. Felt like crap. The injection site was swollen, red and very painful. This extended to my shoulder. It took a couple days to get over it. I have mastocytosis, so I am on mega doses of antihystimines I think that helped alot. Still talk w/Dr. if you have concerns. I still need to get it. Miriam

When I was diagnosed the doc asked about my pregnancies. She said that after delivery is often the most difficult. I agree that you should see about meds that might help, potato chips were mine. Also (don't jump down my throat) you just had a baby are in the armmmmmy and have pots. Thats overwhelming. I would find someone to talk to about it. Blessing Miriam

Works well for me. Mirim

I know when I am lyning down detting ekg.......my pulse is hard to find. Less stress on cardio system so heart doesn't have to pump so hard. Miriam

Sorry for this. There isn't an income level to receive SSI. My husband makes a good living, but my SS goes toward co-pays . Check your dates, actually there was confusion by the judge during my hearing and I spoke up and said thats my error your honor. The other date is good. I think that the fact that I spoke up helped the spped of approval--2weeks!!!!! Good Luck Miriam

Did you have your prolactin checked? I had this also. Good Luck Miriam

Thanks all. Thomas the link was very helpful. Becku, when you get your next ultrasound ask for a gallbladder. TPN is one of the causes. I had an ultrasound yesterday. See Hepatologist next week.

God bless us one and all!!! (this is me feeling crummy) Miriam

I just found out that I have NASH---(I am alphabet soup) Non Alcoholic Steato hepatitis. I have had pain in my R upper Quad sort of below my ribs for years. I was blown off by every one. I had a cat scan to check for hernia,,,,,It came back that I have severe fatty liver. This is usually caused by weight gain when I was diagnosed w/pots I was teaching 4 aerobic classes a day and doing the stairmaster for 45 min. That all stopped.

I don't yet know what steato means. My pcp put me in today. Going back my liver studies have been abnormal for about 10 years. I dd have a choice of B12 shots or a biopsy. Weinied our and have been getting the shots 10 years. Now the biopsy is next. My liver is 22cm!!!!! I am going to check and see if any f this is a part of pots.

Good Day and Penn State don't let me down

When I went for 2 weeks and didn't have any of my questions answered, I faxed them to Dr. Low. He called me and we went question---question till I was comfortable and had all my questions answered. Miriam

There is a connection under information at top of page. Look at that it is actually quite good. I have it, and have given this to my treating docs....Miriam

I too have similar problems. First the eyes, I recommend seeing an opthamologist mine found some very important things. Iused to teach 4 aerobics classes a day plus stairmaster for 45 min. I had dry eye from exercise the opthamologist had me do steps in the office and then checked. This was all around the time that I crashed. No longer can I do that. I did get a soloflex vibrator platform. 10 minutes a day I am still working up to it. Its good. As for sweating I don't but I DO stink!!!!!!!!!!!!!!1 Miriam

Sounds to me like you need a bit less H2O and more salt tablets. Dr. Low said to take tablets or sea salt with the fluids. Also in gatorade lots of carbs unless it is "diet". What about cardiac meds?

I would cut back a bit onn fluids and exercise add more salt, get potassium checked. And see id it helps.

Good luck Miriam

I had alot of cardio time. They were very helpful. I was there for 2 weeks. Had a major snow srorm that closed everything down. At least you will be there when the weather is absolutely beautiful !!!!!!!!

Good luck....I wrote along with my huband a list of questions and issues and went through it with the different docs at the final appt. They see you have tests done and then go over results and give info. Also the fellows that you will see first ARE really the best of the best. Good luck... Miriam

Its true no longer do we leave the room because of the dog!!!!! Its me

I also had this problem. I trien pro-gan which is a short term use can get in pharmacy. When my hair grew back it was/is curly!!!!! I was told to wash my hair only 2-3x week. It did come bacj. Progane is a rest of your life use shampoo, so progane worked FOR ME. Luck miriam

I have no idea what thatis!!!!!!!!!!! What I was thinking is it could be cellulitis or shingles, that would include some spine pain, it followa the course of the nerve on the same side. Do you have a temp?

This happenned to me the first time about 25y ago. My husband says that there is a ?level of falling asleep that you are not asleep . i woke and tried to call no voice tried to knock lamp off table couldn't move. Don't know if I am making sense time to quit now. Miriam

I have mastocytosis, thank you for the excellent explanation. I havn't had that. My arms are leathery and thin I take mega antihistamines.

I am having the ?EGD in october and it sounds like that is what is happening. I have been to the doctor 8x for my esophogus feeling like it was constricting. Painful and scary.

Good luck....Miriam

do you or did you have a rash with it? I would call someone. Sound like a commer. but lydocane patches take the pain away. My side burned and it felt like it was tearing....I put one of those suckers on and felt better. Miriam

Finally a crumb for you. My guess is that you will feel better with the continuous flow of oxygen!!!!!!!!!

So you know at UW in Seattle there are people who know about pots really. Iwas amazed when I got admitted, even the pharmacist came by and I asked a question and he knew!!!! Dr. Otto is the cardio.

Good luck Miriam