CallieAndToby Posted September 27, 2020 Report Share Posted September 27, 2020 Hello everyone. I recently went to my cardiologist's and laying down I had 104 HR then standing my blood pressure was 98/51 and 140 HR. I asked if we can do saline iv's, they refuse to do it!!!!! It's a female doctor. They asked about some medication they tried to prescribe and I repeatedly told them that insurance WOULD NOT COVER IT. Now I'm in a situation. I was diagnosed with cancer earlier this year, I have horrific Interstitial Cystitis, and hyperadrenergic pots. I'm fatigued ALL THE TIME and I realized the POTS is really contributing to this. I'm going to see an IC specialist next week, my oncologist is at Shands but I can't go often b/c I'm so sick, and this cardiologist won't let me see another doctor in the practice who knows a lot more about dysautnomia. I can't go to Vanderbilt, I barely get any money from govn. People have to take off work to drive me. I don't want the covid virus and my immune system is down b/c of cancer and the cancer medication. I live in Tallahassee, FL. Does anyone know what I can do? This is INSANITY AND MALPRACTICE. They had nothing to offer and I left that appointment empty handed, should I really be lying down and getting up with 140 HR and low blood pressure??????? My mom tried the saliva iv's but I will need a port and it HELPED HELPED HELPED. I can't drink these electrolyte drinks b/c they BURN and FLARE my bladder. Also, I swam all summer and that made no difference. All the Dr. suggests is: compression hose and drinking gatorade all day long, well I have IC, I have to sleep and rest a lot. I'm fed up. Quote Link to comment Share on other sites More sharing options...
KiminOrlando Posted September 27, 2020 Report Share Posted September 27, 2020 It is common to not be allowed to change physicians within the same practice. You may need to switch practices. What med is your insurance company not willing to pay for? Is it because they don't pay for that med or because they don't pay for that med with your diagnosis code? Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted September 28, 2020 Author Report Share Posted September 28, 2020 14 hours ago, KiminOrlando said: It is common to not be allowed to change physicians within the same practice. You may need to switch practices. What med is your insurance company not willing to pay for? Is it because they don't pay for that med or because they don't pay for that med with your diagnosis code? Yes it's common. There's only one oncologist that knows about men's and they won't let me see her. It's plain insanity. There is no other practice btw. It's just this one. Monopoly. I want to say the med is nuthera? But every time she prescribes a pill like florinef I get crazy awful side effects. I know the saline bags help with no side effects. I know that the male doctor knows way more than her. Malpractice. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 28, 2020 Report Share Posted September 28, 2020 So very sorry. This is an awful situation. Do you have a general practitioner. My GP is actually the one who is aggressive about getting me on IV saline when I have a severe flare. Quote Link to comment Share on other sites More sharing options...
sitcedar Posted September 29, 2020 Report Share Posted September 29, 2020 I am sorry to hear that, that is really awful. I hope you come to overcome that soon. Quote Link to comment Share on other sites More sharing options...
KiminOrlando Posted September 29, 2020 Report Share Posted September 29, 2020 Yeah, my insurance didn't cover Northera either. Your doctor should be more proactive in helping you find a charitable organization to help pay for it or be open to alternative treatment. That is terrible. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted October 4, 2020 Author Report Share Posted October 4, 2020 Thanks guys. I started thinking about my health timeline. For awhile I was high functioning and I was dealing with the chronic cancer and Interstitial Cystitis and I went into remission for about a year. Then BAM I woke up and was running adrenaline all the time. Nobody believed me. They did my vitals and I was at a constant 125 HR. Instead of sending me to cardiologist and I suggested a beta blocker they sent me to psychiatrists who just drugged me to get me to sleep, because I couldn't sleep. I'm now faced with getting off all of these psych meds. Withdrawal is very difficult. After running on adrenaline for a year, I ended up bedridden for a year. Then the next 9 years I couldn't leave my house/yard b/c I'd faith or be so fatigued. I think ALL OF THIS was some form of Dysautonomia. Again wrongfully diagnosed with chronic fatigue syndrome, the Dysautonomia has always been put on the back burner. I realized the other day I felt fine when laying at bed but when I get up and start to do things I get very ill. I also saw a urologist about IC and he said "I think your nervous system is all messed up and it's affecting your bladder". Now God brings to mind Vanderbilt and I did a survey on their website and they ask tons of questions (2 pages) about: "When you were having POTS symptoms did the doctors ignore you and claim is was psychological and send you to a psychiatrist?" YES! At this point the cancer is being treated and it's chronic, what can I do? They don't know what to do about my bladder but I think it's connected. I decided to ask for a referral to Vanderbilt b/c I think getting help with the hyperagernergic POTS or whatever it is (may have been mis diagnosed) will be the answer to me getting better. I swam all summer and that didn't help any. I can't take walks though and we visited a museum in Jacksonville, FL, I had to be in a wheelchair. Upon standing after laying down 20 mins and with a broken vitals machine, after 15 minutes standing my blood pressure was 98/51 and my Heart Rate was 140. I hope to go to Vanderbilt and get REAL help. I'm super sick getting off of these psych meds and the cancer but I have no choice. Florinef made me extremely ill. There is another they can't give to me because of my bladder. I can't drink gatorade b/c of the acidic acid that literally burns my bladder and flares it. It is unfortunate that I have suffered from this stuff since I was 6 years old but I think aiming at the Dysautonomia might just be the best bet. Also, ivig was extremely helpful with POTS. Any suggestions? Quote Link to comment Share on other sites More sharing options...
KiminOrlando Posted October 4, 2020 Report Share Posted October 4, 2020 I'm glad you are going to go to Vandy. It was a great experience for me. I hope they are able to help you too. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted October 13, 2020 Author Report Share Posted October 13, 2020 Thanks. They never called so right now I have an appt with Dr. Thompson's new intern in pensacola. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted October 13, 2020 Author Report Share Posted October 13, 2020 I'm so tired, sleeping all the time, I get up and feel hot and sick. I really need help. I started taking my beta blocker again and it has helped. Quote Link to comment Share on other sites More sharing options...
HCD77 Posted October 14, 2020 Report Share Posted October 14, 2020 I’m so sorry you are going through this difficult time. I’m glad you have an appointment. I saw the video “Changes “ were they interviewed Dr. Thompson. I’m sure you will get good care there. I hope the intern can get to the bottom of your symptoms and come up with a good treatment plan for you. Keep us posted. Take care Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted October 14, 2020 Report Share Posted October 14, 2020 Hope you get better help and relief soon. So sorry you are feeling so poorly. Quote Link to comment Share on other sites More sharing options...
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