Randi Free

My daughter is seeing a new doctor and he thinks all or most of her problems might be polymiositis and not POTS. She was hospitalized for 3 dyas in SApril unable to walk. At that time her CPK was 279 which is hisher than normal. Her cpk is now over 500. Her legs are still very painful, everything hurts all the time. Her heart rate is always high no matter sitting, laying down or standing and she continues to fall and have episodes where she cant walk unaided. I know there are 3 different types of polymissitis and one can effect heart rhythm. Has anyone else had a doctor suggest this or know anyone with it? Thanks, Randi

Pat, Please check out the ACOR list for Gyn cancers. There is wonderful info from others with your diagnosis. Randi

I am so sorry you are having to deal with this. The only advice I can give you is to get as healthy as you can to withstand the chemo. I wasw diagnosed with stage 3 colon cancer 11 years ago at age 41. I was well over a 100 pounds overweight. I had high blood pressure and poor kidney and liver function test results. I was having heart palpatations. Before I started chemo I consulted a naturopathic doctor who helped me plan what herbs and supplements, vitamins I wanted to take and what things I needed to eat. I also took up tai chi. I did 6 moths of chemo thru a catheter placed in my chesy wall.My kidney and liver functions normalized while on chemo. Itt didnt lose my hair. I never had any vomitting or diarhea. I got no mouth sores. I had lots of energy and took up hiking while on chemo. I lost 80 pounds and felt great. I realize some people can't break down the chemo drugs as well as I did but I think it still makes since to be as healthy as you possibly can to fight the cancer. I don't know about your type cancer and what chemo drugs you mighht need. Perhaps you won't need any. Good Luck and God Bless Randi

My daughter saw the neurologist today. Except for her abcess wounds she is doing well with most iof her POTS symptoms. He went over all of her test results, inpaitent and outpatient. He did no big tests just neuo work up exam. He says he wants to repeat her MRI in 2 months to rule out MS but he doesn't think that's it. He ssays she has indications of a nerve disorder and a muscular disorder. When not looking she can't tell if he is raising her toes and fingers or lowering them. She can';t feel vibrations on her legs, feet or hands. Her reflexes on her knees and ankles have come basck after being completly absent for months and her gait is closer to normal. He says she diffently has a blood pressure problem as indicated by the TTT but her halter monitor show supraventricular tachycardia, atrial flutter and some other arythmia that he can't correlate with her standing or laying so he doesn't think she has POTS. His best guess is a rare disorder call periodic paralysis , hyperglecemic type. Anyone familiar with this? We are seeing the cardio doc next week to see if he hasn't any other medicine that can bring her heart rate down to a level where she can do some cardio or at least walk. Just gong up one flight of stairs brings her to 160-170bpm. Norpace didn't work, verapamil and other usual drugs haven't helpec. Any suggestions on that too? Thanks, Randi

My daughter's surgery went well. She did have some problems with excessive bleeding on the left side. She now has 6 very large incisions on both hips/upper thigh areas. She was released from the hospital last night after an 8 day stay. They still have no idea why this happened to her. I will be cleaning and packing her incisions daily with weekly visits to the wound care clinic. Every time the nurses got her up to walk her pulse would zoom to 150 or more. Her b/p was low at 70/40. I had to give them a crash course in POTS as none of the nurses had ever heard of it. Thanks for all the good wishes. Randi

You may remember I wrote about my 23 year old daughter being in the hospital with abscesses since last Thursday. Today they decided that surgery is needed to get rid of them. She has been on antibiotics for 9 days, 6 of them in the hospital on I.V. antibiotics. They drain 5 of the 15 abscesses and pack them every day while she screams in pain. They will give her general anesthesia tomorrow and expect her to be in the operating room about 1 to 2 hours. I will talk with the anesthesiologist tomorrow (surgery at 7:30 am mountain time) but I don't know what special concerns a POTS patient might have? Any insight? Randi

It's interesting that you mention chicken pox. My mother had surgery on June 2nd for trans tracheal oxygen and developed shingles while in the hospital. She had come home and was recovering really well. On June 15th something happened and she couldn';t breath and was confused. I called an ambulance and we ended up in the ER where they said her white blood count was elevated indicating an infection of some type. She unfortunately died just 3 hours later so I don't know what the cultures showed. Mom lived with us and I've mentioned to my daughter's doctors that mom was recovering from shingles and had an infeftion of unknown origin when she died. Because she had really bad pulmonary fibrosis they assumed a bleb or something on a lung ruptured and killed her but now I'm wondering what the infection was. My daughter does seem to be having less drainage out of the abscesses now after 8 days on antibiotics but I'm still not sure when she will be released from the hospital. I mentioned perhaps a collagen problem being the reason for the abscesses but no one seemed to think it was a possibility but I will keep researching. Randi

I wrote last week about my daughter developing cellulitis on her hip. She was seen last Monday and put on augmentin. Tuesday it was worse and she went to the immediate care clinic where they thought it might be MRSA. They put her on Septra. By Thursday she was in excrutiating pain with 7 abcesses on both hips and thighs. We went to the ER and she was admitted. She now has at least 15 abcesses, 5 of which are drained and packed with gauze every day. She is on a dilaudid pain pump plus her klonipin. She was put on Vancomyacin and 3 other antibiotics until MRSA was ruled out. It's a staph infection but sensitive to antibiotics. An echo was done to make sure it's not in her valves because laying down her bp is 80/50 and her heart rate is never lower than 110. I've explained her POTS to the doctor but I don't think he's familiar with it. I told him these abcesses are where she has been complaining of hip and leg pain for 6 months and that she was in the hospital unable to walk at all in April. His best guess is that because she falls frequently perhaps these abcesses are where she has bruised. I didn't know a bruise could cause abcesses like this. She is also developing them on both arms now where she doesn't typically bruise from falling. She is still after 7 days spiking a fever several times a day. She has several numb spots on both legs and has had for several months but they aren't where the abcesses are. Another doctor suggested they were do to poor circulation in her legs but wouldn't they be more likely to show up in the feet, certainly not the arms. I'm confused but feel it all has to somehow be related. Has anyone had this happen? Randi

My daughter developed a sore spot on her left hip Friday. She ran a fever and had a headache all weekend. Today the spot is the size of a silver dollar and is swollen and very painful and red. She has two more starting on her right hip. The doctor diagnosed cellulitis. He said the fever is caused by this. He put her on augmentin, drew circles around the effected areas with permanent marker and told her go to the ER if it spreads outside those marks. He says poor circulation from the POTS could cause this. I've never heard of that. Has anyone had this? Randi

Pulse ox which is low can cause tachycardia but I don't think tachycardia causes low blood oxygen. I have a pulse oxometer at home and we check my duaghter often because it gives an accurate heart rate. her pulse ox is always about 97 and we live at 7000 feet elevation so it will run a little low.

Every time I have been anemic from blood loss I have craved ice, just had to be constantly chewing ice. My doctor told me this is a very common symptom of anemia. Randi

My 23 year old daughter has anxiety disorder. She was diagnosed with it at age 12 right after a bad case of mono. and my stupid oncologist telling us I might only have months to live. Doubly whammy for her and she was diagnosed with depression and anxiety. When the POTS symptoms first started her PCP did think the elevated heart rate was due to anxiety from being in his office even though we told him it happens at home. She had a good cardiologist listen when she showed up at the ER with chest pain. An abnormal EKG led to a 3 week event monitor which showed heart rates of 150 or higher when she was asleep. That kind of rules out anxiety as the cause of the tachyccardia. She also shows some arythmia. My granddaughter had a 48 hour outpatient eeg which showed seizures and her medicaid paid for it. There are options for that. Maybe an inpaitient stay with halter monitor would help convince them it's not in your head? Randi

Richard, I'm fairly new to this but what you describe sounds like it could be POTS. My 23 year old has the rapid heart rate and fluctuating bp. She also has her legs just give out with no wrning. This can last from a minute to 3 days with her unable to walk. She is going to have an EMG to test her muscle/nerve connection. She also had a positive tilt test. Randi

Maxine, Is your brother aware of the colon cancer support group online? I've been a member for years and like this group the people on the colon cancer list know more collectively about the latest treatments than any one doctor could possibly know. Randi

My daughter is on norpace. Before starting it she had an ekg that showed prolonged qt intervals. The cardiologist wasn't concerned as he attribites it to POTS. This was 3 months ago. She's been on norpace with mild improvement. Does the literature on this drug call for repeat ekg? randi