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faithinspires

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  1. Thanks for your replies! I hope from my health to improve more at some point so I can spend more time posting again. I miss the group! Here's the update. Surgery is over...thank God! Had severe dehydration...lots of IV fluids. Required oxygen...as my level fell during the procedure due to my asthma, sinus, & upper respiratory infection. I failed to fall asleep during the procedure again just like last time. The procedure of painful at times, although it was over very quickly. They found no polyps this time...thank God! I still have the same prior things they found during my last gastroscopy/colonoscopy. The only new thing they found was a hemmorrhoid very high in my colon that was the source of the rectal bleeding I have been having...so not too serious there. They did 8 biopsies...results in 7-10 days. My BP/HR did well through the procedure! Yay! I slept for 24 hrs after the procedure. Today, I am achey & wiped out...but soooo glad it is over! My son is tolerating & responding to the atenolol so far! Thank God! His cardiologist called today & scheduled his TTT for May 16th at the Children's Hospital.
  2. Just dropping in to update & send my regards to everyone! I am still too ill for much posting since my last post...still waiting for a neurology appt. (end of June) cardiology appt? Today I will be having my 2nd gastroscopy & colonoscopy. A bit dehydrated from the prep. Still relying on Midodrine. My oldest daughter is still taking florinef & midodrine. She is recovering from a laparoscopy she had earlier this month. It went well. She is seeing her cardiologist in June as well. My youngest 10, my son, had a big crash yesterday...BP fell to 75/36 HR went up to 147. He started on his new medication shortly after this. His 2nd dose was this morning so we will see. They put him on the beta blocker Atenolol. He sees his cardiogist mid-May for a tilt table test at the children's hospital. Thats my updates for now! Take Care! You are all in my thoughts!
  3. Thank you all for the replies! My son is really taking this in stride with a positive attitude! I am having trouble now getting in to see Dr. Rose Dotson, even though Mayo referred me. The neurologist here is working on it & I am waiting for them to get back to me. Although, from what I have heard, Dr. Dotson sounds like she would be a great Dr. I just hope if they can't get me in with her that they find someone familiar with this condition to treat me! For those of you who see Dr. Dotson, we must be in close proximity then. Dr. Dotson is about 100 miles from me. Well Wishes to you all! Renee
  4. I get numbness all the time in my hands, sometimes just my fingers. In my feet & my legs...not always both feet or both legs at the same time. Right now my left pinky & left foot our numb...
  5. Used to deal with endometriosis & pots. I wasn't on Mestinonin though. For pain medications for the endometriosis they tried all pain meds. Darvocet was weak & gave me a horrible stomach ache. Vicoden helped & could be prescribed in weaker or stronger doses...did fine with it as long as I ate before taking it. Percocet was the strongest of the pain meds...not as rough on my stomach...but a little much to take in other ways. Coedine (sp?) made me sick sick sick & tired. Hope you feel better & find something to manage the pain better.
  6. Just wanted to let you know that you are not alone. I too have been diagnosed with neuropathy, as part of this condition!
  7. I am going to be brief as I am still waiting for referral to the new Dr. I mentioned in my last post & I am having a major autonomic crash. My 10 yr old son had his appt. today. His diagnosis was NCS. Unlike, his 18 year old sister an I he leaned more towards bradycardia than tachycardia. They want us to journal symptoms & fluid intake. In the meantime, we need to find a pediatric specialist for this; so he can have further testing & begin medication. If anyone has suggestions for a doctor for him in WI, please let me know. My 18 yr old daughter who shares this condition has been scheduled for surgery, a laparoscopy, on March 22 As with her prior surgeries they will be monitoring her more closely and managing her anesthesia & medication differently because of the condition. Other than that, I have a fever, sinus infection, and a miserable toothache. Take Care to ALL!
  8. Thank you all for your support! Dayna, I remember now that you had replied after my last post when I failed the last batch of autonomic function tests. Thank you for the information on Dr. Dotson, it is encouraging! I will send you a PM.
  9. briar rose, Yes that is the address & phone number I was given...
  10. Has anyone ever been seen by or heard of Rose M Dotson from the Regional Neurology Center in Milwaukee. She used to work with Dr. Low at Mayo and he is referring me to her. I know I have heard the name before from another member, but can't remember who. I also have found her on the internet in the past, but now I can't. BRAIN FOG!! I am just wanting details about her and what she all treats etc. If anyone has seen her, how she was regarding these types of conditions, etc. You know the fears of getting your hopes up for each next Dr. and not having things work out, causing you to fear the appt. with the next. Sorry, I have been away from the group. As you may remember from my prior posts I failed more testing, became sicker, my doctors said my illness has gone beyond there level of expertise and my condition is more chronic, severe then previously thought. So the wee bit of energy I have goes to my responsibilities & children. Also, some may remember that my daughter, now 18, has this condition. Now my son, 10, is displaying symptoms, seeing his doctor, having testing & has been referred to a cardiologist or for all the usual tests to determine if he has the condition as well. Once again, as a mother, gone through this before. My heart is breaking for my son. He also has been sick for the past 3 weeks with atypical pneumonia & asthma...so many meds for that & for migraines. Many dr. visits. I could say so much more, but will leave it at that, as it is the gist of things.(and this is long enough)Thanks in advance to all who reply. Prayers & hugs to all! Renee
  11. Hi! Yes flourescent lights bother me, as does sitting at the computer. I also get dizzy, tired, sore at the computer. Sometimes I am unable to type due to tremors. Renee
  12. Stacey, Its good to hear that everything came out alright for your father in law! I will continue to keep him in my thoughts and prayers for a speedy and fully recovery! Sorry to hear your appt. got cancelled. It is so frustrating when they have to cancel. Take Care, Renee
  13. Suzanne, I agree with everyone else's suggestions. At time I have been able to use my nordic track elliptical. It is nice because it has the bars you can hold onto or stationery ones you can hold onto. I can also adjust the settings on it according to my ability. The other thing I like about it is that if you hold on to the bar, it monitors your heart rate. I have been too sick to use it lately though. During those times I just take brief walks. I also found the YAZ exercises posted on Dinet to be useful. Renee
  14. Linda, And heartburn too! You poor thing! I have a ton of gastrointestinal problems. I am on Protonix 40 mg twice a day. Tried all of the other prescription ones, until this one finally worked! Feel better soon! Renee
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