Cala Posted September 25, 2013 Report Share Posted September 25, 2013 I really need to get this off my chest.Dr visit today. On the last visit he told me he's certain my system is starting to "slip" and he wants me to monitor my blood pressure. Lying down, standing 1minute, standing 3minutes. I'm religious with this right? He never even looked at it today. Did not even glance at it....A few days after last visit my system did indeed "slip" as he put it. Blood pressure, heart rate bottomed. Almost ended up in the hospital. Came off his beta blocker experiment on my own because after 4 days of calling and leaving messages that were never returned I finally got "permission" to come off the drug.Explained all the pain I was in, how my heart has went crazy, currently wearing a Holter monitor because of it from my general practice doctor. I mentioned some ideas, medicines I'd researched. I had 2 pages of symptoms, some old some new. Some rather alarming developments. He just nodded and grunted. Turned on his chair and said to increase my Fludrocort .1mg to 2 a day (OMG what?) see a cardiologist and to have a nice afternoon and left the room....Now....I'm not one to get upset. I have a referral to Vanderbilt currently so I've got help coming but to have off the wall flippant care like this was just painful in and of itself. I sat there in shock.Seriously the drug he wants me to increase would make me retain so much fluid it would most likely kill me if there is anything major wrong with my heart.Sorry to rant and rave but seriously, this man knows Dysautonomia. He's an expert. He diagnosed me! How on earth.... it just blows my mind... Quote Link to comment Share on other sites More sharing options...
Tachy Phlegming Posted September 25, 2013 Report Share Posted September 25, 2013 You may not fit into his model of what he is treating.If it's :"OMG what?," a cardio might agree with you about that med.Vanderbilt may be more helpful.Are you still a little better off on the Pyridostigmine? Quote Link to comment Share on other sites More sharing options...
Cala Posted September 25, 2013 Author Report Share Posted September 25, 2013 I forgot to mention he did double the Mestinon to 2 60mg doses a day instead of 2 30s so not all was lost Sorry I am still in shock just a bit Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 26, 2013 Report Share Posted September 26, 2013 WOW! That is just incredible. I can't say what I want here but just wow. I can't believe it. It seams you need a new doctor. I change doctors like underwear. Lol. Quote Link to comment Share on other sites More sharing options...
Cala Posted September 30, 2013 Author Report Share Posted September 30, 2013 It keeps on getting better and better....Called Vanderbilt earlier, it's been right at a month since my referring doctor sent the referral for an appointment right? And they told me it could be up to 2 weeks, so I figured 4 weeks was a bit much.They didn't even have my name...I find out the doctor never even sent the referral at all...I sat down in the floor and didn't even have the will to cry. Now I understand why so many patients come in the door looking for a fight the way I seen those customers in retail. I guess I'm going to have to pull on the big girl panties and become like them. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 30, 2013 Report Share Posted September 30, 2013 It keeps on getting better and better....Called Vanderbilt earlier, it's been right at a month since my referring doctor sent the referral for an appointment right? And they told me it could be up to 2 weeks, so I figured 4 weeks was a bit much.They didn't even have my name...I find out the doctor never even sent the referral at all...I sat down in the floor and didn't even have the will to cry. Now I understand why so many patients come in the door looking for a fight the way I seen those customers in retail. I guess I'm going to have to pull on the big girl panties and become like them.Its because of things like that that I'm such a pain.. Because if they dont do it infront of you, they forget. If you dont check up on the progress they wont care. I feel for you! :-( Quote Link to comment Share on other sites More sharing options...
Portland Bedhead Posted September 30, 2013 Report Share Posted September 30, 2013 Cala, I'm so sorry... I totally empathize with your situation. I seem to have this experience every time I see my neuro as well, and I always leave in tears and wanting to just give up. Every day seems like a week while I'm trying to just hold on until my next appt, hopeful that my dr might be able to something to lessen my suffering and improve my quality of life (even just a tiny bit), so when they drop the ball, or simply shrug their shoulders or throw a new RX at you that makes absolutely no sense, it's more than just frustrating!I too have had a worsening of my condition and many new and alarming symptoms. I'm also on Mestinon. I finally had to call this morning and demand to be seen, as my emails stating that I suddenly am unable to walk on my own, and am having breathing and swallowiing issues didn't seem important enough to warrant a reply by my neuro for the past two weeks.BTW, I was originally given Propranolol by my neuro (a POTS specialist), which made my fatigue 100xs worse. Another dysautonomia specialist switched me to Fludro and Adderall, and it totally helped me for many months (especially with the blood pooling in my legs), but now I'm having adrenaline surges and palpitations again, and stopped taking both (on my own, since my dr never returned my calls or emails), as they certainly would have killed me to continue.I hope things get better for you! Quote Link to comment Share on other sites More sharing options...
Cala Posted October 1, 2013 Author Report Share Posted October 1, 2013 So I just arrived home from a 3.5 hour visit to my GP. Interestingly enough he took everything in stride, called me a new referral in to Vanderbilt without batting an eye and handed me paper proof that he had done so.He also looked over his own files, got on the telly and demanded files from my neuro to be sent. Went over them with me when they arrived. (Many of these test results of tests I was unaware were even done, much less discussed with me afterwards) He was appalled that the majority of the tests were done well over a year ago and no follow up testing had been done despite my repeated complaints of getting worse. Last blood panel was 14 months.My Gp ordered full blood work, prescribed medication on the spot for my low blood sugar and for my low blood pressure. (Sternly stating that "This has been going on for months how can this "man" ignore this problem???")He also printed out and signed a disabled parking permit and handed it to me and told me to call Vanderbilt in the morning to verify and he would see me every week for the next month until he gets orders from Vanderbilt.I think my GP just fired my neurologist LOLI think I also need to put this one under the good doctor stories because first of all I had honestly no idea he knew so much, second I was floored at how hostile he could be when crossed.There ARE some good ones left! Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted October 1, 2013 Report Share Posted October 1, 2013 WOW! THATS AMAZING! This does need to go down in the good doctor stories!!!! Man! Tisk tisk he sounds awesome! I'm so glad you got over with! Quote Link to comment Share on other sites More sharing options...
kayjay Posted October 1, 2013 Report Share Posted October 1, 2013 So I just arrived home from a 3.5 hour visit to my GP. Interestingly enough he took everything in stride, called me a new referral in to Vanderbilt without batting an eye and handed me paper proof that he had done so.He also looked over his own files, got on the telly and demanded files from my neuro to be sent. Went over them with me when they arrived. (Many of these test results of tests I was unaware were even done, much less discussed with me afterwards) He was appalled that the majority of the tests were done well over a year ago and no follow up testing had been done despite my repeated complaints of getting worse. Last blood panel was 14 months.My Gp ordered full blood work, prescribed medication on the spot for my low blood sugar and for my low blood pressure. (Sternly stating that "This has been going on for months how can this "man" ignore this problem???")He also printed out and signed a disabled parking permit and handed it to me and told me to call Vanderbilt in the morning to verify and he would see me every week for the next month until he gets orders from Vanderbilt.I think my GP just fired my neurologist LOLI think I also need to put this one under the good doctor stories because first of all I had honestly no idea he knew so much, second I was floored at how hostile he could be when crossed.There ARE some good ones left!He's a keeper! My gp was angry on my behalf that it took so long for me to get diagnosed. He thinks that me being a young female was an issue for some doctors. He that if I was male I would have been taken seriously sooner. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted October 1, 2013 Report Share Posted October 1, 2013 That GP reminds us that there are compassionate, great doctors out there!! I'm glad he helped you so much!I'm curious, what did you receive to help with your low blood sugar? Quote Link to comment Share on other sites More sharing options...
Cala Posted October 1, 2013 Author Report Share Posted October 1, 2013 I was so excited last night that I didn't actually look at what in had prescribed LOLToday I looked at the pad and I realized it was too much going on for the poor man and he must have misunderstood me seriously wrong LOL he prescribed me miglitol (Glyset) for my low blood sugar... he must have gotten seriously confused or misunderstood me because to my understanding, this is for high blood sugar?I need to talk to my pharmacist in a bit and do some research before I try this one on for size. I'll let you know. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted October 1, 2013 Report Share Posted October 1, 2013 Don't quote me on this, but I think they prescribe Glyset to keep the glucose from going so high that it causes a massive insulin release, thus preventing the resulting low glucose. I tried it and it didn't seem to work too well for me. Quote Link to comment Share on other sites More sharing options...
Cala Posted October 1, 2013 Author Report Share Posted October 1, 2013 Yeah that's what I'm seeing with the research I'm doing. I'm still waiting on the doctor to contact me back.The pharmacist told me she didn't want to give it to me, knowing I had hypoglycemia, without me having verification from the doctor about the reasons for it and feeling comfortable about taking it. I'm not feeling brave about this even with his expectations LOL I think I'd rather just eat every 2 hours like I do now than risk that. Quote Link to comment Share on other sites More sharing options...
angelina Posted October 1, 2013 Report Share Posted October 1, 2013 Wow Cala! So sorry about your Neuro. There must be something up with Neurologists these days. I fired mine after he didn't get back to me for 2 and half months. His last words to me were, "I am going on vacation tomorrow, but I will look at your results before I leave and let you know my plan." After several phone calls and emails all I got was a nurse telling me she had given him my messages and would I like to make an appointment. So I asked why I would want to drive almost 6 hours to see him without first knowing the results of the tests I had had and the "plan" he had in mind. His nasty reply ( through the nurse via email) was take some iron and not bother him! Really????Thank goodness for your GP! Quote Link to comment Share on other sites More sharing options...
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