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Dumped by my Doctor


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Last Wednesday my neurologist called me at work because I'd emailed her back in December about some concerns I've had. She hadn't replied and I just figured my email had gone into her spam folder. I was right, it had. She wanted to make sure i knew she wasn't ignoring me so she called me directly when she found it and talked to me about these symptoms and asked me how I was doing. 

 

I explained that it had been a rough Winter, because it has. We've had a very "mild" Winter here with lots of rain and lots of changing weather. We've had windstorms, heavy rain storms, sun at very strange times, very cold days followed by strangely warm days. The barometer  has been all over the place so my head has as well. I told her I was doing everything she has asked me to do; that the Cefaly device didn't work. I used it daily for two months for 40 minutes twice a day, but it didn't help and it was $400 so I returned it. 

 

Let me say that I have really REALLY liked this Doctor. I've felt very supported and like she really was trying to find a resolution. She told me up front that it would probably take two years, that was a year ago. 

 

So while we were talking she said "Often people think they are doing all they can do but they aren't." I assured her that I am because I truly am. I take every supplement. I exercise; both cardio and weight lifting as she has instructed. I have a SAD lamp that I use at work all day, I drink the tea, take the medications, did the acupuncture, get the sleep, read all the books, and even sought out a therapist for chronic pain. But she really acted like she didn't believe me and in the end she said, "I don't know if there is anything else we can do for you..."

 

So is that it?

 

This is from a teaching hospital/clinic. I went there specifically because I hoped that they would try a variety of things and would not give up on me. I am not, believe it or not, a whiner. I am very pro-active about my health which is why I am a runner and eat clean and am so frustrated to be in this positition in the first place. I am used to being able to find a solution to my problems. I spent the rest of the afternoon trying not to cry in front of my students. The only real solution she gave me was to move to Hawaii, which is not reasonable right now. We have discussed that moving might be in our future and we are putting a five year plan in place.

 

I just felt that it was very unprofessional to give me this news over the phone, especially since she has only seen me in person three times (I've seen PAs the other times). I also think that since she said it might take two years that it confused me that she'd dump me after only one. In addition, she really was acting a LOT different than she'd ever acted like maybe she was having a bad day or something and I got "fired" because of it. The last time I saw her she told me how proud she was of me that I wasn't just laying around accepting my fate because a lot of other clients she had who were my age where on disability, but I was working full time and actively participating in my own healing. Uh, where is THAT doctor and can I have her back?

 

So right now I'm very confused, and of course after an afternoon of feeling sorry for myself I realized I can just go find another clinic but darn it...that was painful!

 

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Hi,

I am sorry. I know my neuro doctor gets annoyed with me but that is because I won't take the meds and he feels like there is nothing more if I won't listen to him. I told him I still wanted him around and for my yearly MRIs.

I'll keep going but I honestly don't think he can help me anymore. I just go every three or four months and give him my update. I do like asking him questions that others cannot answer and discovered I have these "after stress" migraines, I never knew existed. I'm fine when working but can go down hard when relaxing. Go figure.

Well, if you like her make an appt to see her again in person and explain things. Won't hurt. No pun intended.

Iola

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Hi Teechur,

 

A strange one this!  Why would she dump a walking, talking research project, in you?

 

Surely finding answers is what doctors are all about and until they found answers to your problems, they haven't finished.  Or is it that she was under pressure from above to make way for fresh patients and you were in the way?

 

In my opinion what she has done to you is inexplicable and is a poor reflection of her as a doctor unless she is under pressures that you are not aware of.

 

I had a holiday in Hawaii several years ago in Waikiki Beach, just outside Honolulu.  Did the Pearl Harbor trip and the ranch where they shot Jurassic Park, and Hanamaua Bay where you can swim with the tropical fish.  Had a fabulous time, it is a lovely part of the world.

 

Iola, I think you feel ill when you feel you are able to let go after you have done your work and you put in a lot of effort not to let others down and to show you are coping...  Please be careful.

 

Good luck to both of you - Teechur, I hope you find a doctor who can give you the answers you seek.

 

Macca

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I did ask for one more appointment to have them review my medications and see if there is an adjustment that can be made. At that appointment I will see the PA and ask her about things. I agree, Macca. I think that since my situation is uncommon, it would be interesting to see how it all pans out. She may be right. I may need to move and darn, I'd hate it to have to be to Hawaii!

 

When I've been at appointments I have seen her notes on me and they have been very positive. Her descriptions of me as a person have been complimentary. So I don't think that it's personal or that she has found me annoying. I've only emailed her a single time. I haven't sat in her office and whined. In fact last time I was feeling better, as it was the end of summer. 

 

Sometimes I feel ready to give up. But then what? It's like give up to where? 

 

Iola, that does make sense. Your body keeps on coping until it simply can't any more and then you relax and the headache comes on. Often my worst ones come at night because my body's defenses are gone. Then all I want to do is go to bed and cuddle my dogs. I hate that. I used to stay up until 11. Now I'm look at the clock at 7 and thinking "Is it too early for bed?" LOL! Last night was actually a good night but I try to remember not to waste my spoons on good days. I did teach bootcamp and felt great, but made myself get into bed at 10 for a solid 7 hours of good sleep. Woke up with a headache again today, but it is what it is and at least I wasn't groggy and my cold is almost gone! Yay for that!

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Teechur- Just my opinion but I would definitely go back and ask to see her, not the PA. If you can take any proof that you are abiding by what she/they are asking of you. Maybe receipts for the meds or a log at a gym, I don't know be creative. And just ask her straight out why is she dropping you after 1 year when she said it may take 2 years? One other thing you may want to check is- can you get a copy of your medical file they have on you. The reason I mention this is because in the US some medical places are getting into "portals" that the records go into and then the patient can log in and review stuff, likes meds, appts, and records.

 

When I was reading thru one of mine it had that I was a smoker and drank caffiene on a regular schedule and both couldn't be farther from the truth. So the next time I was in the office I asked them to correct that. So I'm just wondering if there is something in your file that may be incorrect. It may be worth looking into.

 

So sorry to hear about the headaches!! I only suffered from migraines before my brain bleed, and still do- but also have these "other" headaches. I'd rather just have my migraines, I have meds that work for them. These other headaches not much works on them. I am seeing someone for that and we are working it.

I wish you the best of luck. Let us know how it works out.

 

Iola- I've heard that it is common to get headaches on "days off" or weekends and they could be from going "off" schedule. Say during the week you get up at 7am have coffee, breakfast and go to work. Then on the weekend you sleep in until 9am and skip breakfast. I've heard to try to always stay on the same sleeping and eating schedule.  Worth a try. Wish you the best.

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I did go in. Getting to see the actual doctor is very hard, but I did see the ARNP (not PA, I was mistaken). She took a full hour with me and answered a lot of questions. Long story short, there is still some things we can try and they aren't dumping me. No real explanation about why she said that the first time. I felt better when I left about the situation, at least. Increasing my Duoloxatine and late Gabapentin. 

 

Hope it helps.

 

Ponigirl I did have some innacuracies on my records too. I "had cancer" and was a smoker. NO! That's why I didn't get life insurance! I had them fix it. I did have a tumor removed that would have been cancer, most likely, if left in there but it wasn't cancer. I never even had chemo or radiation. I never smoked...okay that ONE time when I was 17 but I threw it out the window after three puffs because it was awful!

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