TIME TO SWITCH DOCS???
Once again - my last visit with my neuro sent me into a "tailspin".
I ALWAYS give her any updated list of "new", "worsening", and "continuing" symptoms at each visit. I do it to speed up our visit (she's always on the run!) and to make sure we discuss areas I am concerned about or have questions about.
On my last visit I mentioned I was having increased problems with swallowing/choking. As a side note was a reminder to speak to her about aspirating/pneumonia. She told me there was no way I was aspirating and no need to discuss pneumonia. However - upon getting ready to end our visit she said she was referring me to a Speech Pathologist to have my swallowing evaluated.
I told her my other major condition that had deteriorated considerably within the past year was my soft voice. People simply cannot hear me! My husband & best friend will just speak up and tell me they can't hear what I am saying. Others get a blank look like they are tuning me out or will make excuses about not being able to hear well. It's constant! So - I asked about the "Big & Loud" program or something similar. She said there was NO WAY I needed any help with this issue.
She then told me she cannot understand why I am not getting better - something is "hanging me up". She said she would like for me to see a Clinical Psychologist. She was SHOCKED when I said I would go! I told her I was willing to do ANYTHING to improve my symptoms (after I got home & read up on just what you may be seeing a Clinical Psychologist for I understood better why she acted like I would freak out over going!). After NOT receiving a call to set up an appointment after 3 weeks, I called my neuro's office. First - they spent 15+ minutes just trying to find me in their system. Then - they looked at my file & admitted they had overlooked the order. Then - they said they would have to transfer me to scheduling. After 15 minutes on hold I elected to just leave a message. That was yesterday. Still no word....SURPISE! LOL)
Have now had 2 visits with the most amazing Speech Path. After evaluation, she told me on my first visit that I WAS aspirating (gave me a handout on that) and that I very much needed to watch for pneumonia (another handout of symptoms on that). She said my neuro had not sent orders for voice work. However - she was sending her report, along with a request for extra visits to work on ways to improve the volume of my voice. I told her my neuro said I didn't need that yet. She said it's better to work with PD patients sooner rather than later. Much better rate of improvement if treated early on. This week I was given a list of the three levels of Dysphagia along with suggestions of foods to avoid & their substitutes. We also discussed eating from the menu while dining out (something I absolutely DREAD doing is eating in a public place!). No word back on the voice work she requested.
Pretty sure I need to change docs, but feel like I need to finish up the visits with the Speech Pathologist and Clinical Psychologist first. I think it would be of value to me and to my next doc.
Grrrrrrr......it's hard enough to deal with the "new Laura" (there's a whole journal entry there!). I just think when my neuro decided to split from the medical group servicing our entire area and open her office independently, then keeps adding additional doctors and Physician Assts., plus now has offices in three cities - it has taken away from patient care. When she walks in the door to see me it's like the first time she has even looked at my file since my last visit (she doesn't even ask about issues/instructions she gave me on my prior visit). Visits are super quick- like she doesn't understand that because MY PD doesn't have me shaking like crazy I have a truckload of symptoms most cannot see (especially during such a brief conversation with me).
Took me so many doctor visits & tests (we're talking YEARS here, folks!) to connect the dots and come up with an actual dx. Just the thought of starting over with another doctor wears me out! However - the thought of my treatment continuing as it currently has feels like I have no support & no understanding of all the specifics of PD.
Sorry - weighing heavy on my mind & just had to put it out there for comments/thoughts....
I ALWAYS give her any updated list of "new", "worsening", and "continuing" symptoms at each visit. I do it to speed up our visit (she's always on the run!) and to make sure we discuss areas I am concerned about or have questions about.
On my last visit I mentioned I was having increased problems with swallowing/choking. As a side note was a reminder to speak to her about aspirating/pneumonia. She told me there was no way I was aspirating and no need to discuss pneumonia. However - upon getting ready to end our visit she said she was referring me to a Speech Pathologist to have my swallowing evaluated.
I told her my other major condition that had deteriorated considerably within the past year was my soft voice. People simply cannot hear me! My husband & best friend will just speak up and tell me they can't hear what I am saying. Others get a blank look like they are tuning me out or will make excuses about not being able to hear well. It's constant! So - I asked about the "Big & Loud" program or something similar. She said there was NO WAY I needed any help with this issue.
She then told me she cannot understand why I am not getting better - something is "hanging me up". She said she would like for me to see a Clinical Psychologist. She was SHOCKED when I said I would go! I told her I was willing to do ANYTHING to improve my symptoms (after I got home & read up on just what you may be seeing a Clinical Psychologist for I understood better why she acted like I would freak out over going!). After NOT receiving a call to set up an appointment after 3 weeks, I called my neuro's office. First - they spent 15+ minutes just trying to find me in their system. Then - they looked at my file & admitted they had overlooked the order. Then - they said they would have to transfer me to scheduling. After 15 minutes on hold I elected to just leave a message. That was yesterday. Still no word....SURPISE! LOL)
Have now had 2 visits with the most amazing Speech Path. After evaluation, she told me on my first visit that I WAS aspirating (gave me a handout on that) and that I very much needed to watch for pneumonia (another handout of symptoms on that). She said my neuro had not sent orders for voice work. However - she was sending her report, along with a request for extra visits to work on ways to improve the volume of my voice. I told her my neuro said I didn't need that yet. She said it's better to work with PD patients sooner rather than later. Much better rate of improvement if treated early on. This week I was given a list of the three levels of Dysphagia along with suggestions of foods to avoid & their substitutes. We also discussed eating from the menu while dining out (something I absolutely DREAD doing is eating in a public place!). No word back on the voice work she requested.
Pretty sure I need to change docs, but feel like I need to finish up the visits with the Speech Pathologist and Clinical Psychologist first. I think it would be of value to me and to my next doc.
Grrrrrrr......it's hard enough to deal with the "new Laura" (there's a whole journal entry there!). I just think when my neuro decided to split from the medical group servicing our entire area and open her office independently, then keeps adding additional doctors and Physician Assts., plus now has offices in three cities - it has taken away from patient care. When she walks in the door to see me it's like the first time she has even looked at my file since my last visit (she doesn't even ask about issues/instructions she gave me on my prior visit). Visits are super quick- like she doesn't understand that because MY PD doesn't have me shaking like crazy I have a truckload of symptoms most cannot see (especially during such a brief conversation with me).
Took me so many doctor visits & tests (we're talking YEARS here, folks!) to connect the dots and come up with an actual dx. Just the thought of starting over with another doctor wears me out! However - the thought of my treatment continuing as it currently has feels like I have no support & no understanding of all the specifics of PD.
Sorry - weighing heavy on my mind & just had to put it out there for comments/thoughts....
Replies
Is she a movement disorder specialist? Honestly, PG there are a lot of red flags with this doctor. As hard as it is to change, I can see why you are considering it. I specifically cringed when you wrote she dismissed what you were describing about the swallowing issues so quickly.
The speech pathologist sounds really good though! I know it\'s not fun to start over, but from what you have said, I think it would be a wise move. Sorry that you have to go through all of this. Sending a huge hug your way!!!!
ssues so her so quickly
But your speech pathologist sounds awesome
Darn kindle - ignore the last two lines- I thought they got deleted. Apparently not!!! Oh well- gives me a chance to send another big hug!!
Yes I think it\'s time to find another Dr. From your prior journals. You live in a smaller community? So that will probably be an obstacle. Best Wishes and Hugs Brian
Laura,
As daunting as it is starting all over again with another Dr, it sounds as though you are not getting anywhere with this one anyway.
I had similar problems with a sleep specialist, I began to think that she had the wrong notes as I couldn\'t relate to what she was saying and she was too hurried and preoccupied to listen to me. I finally gave up on my last visit as I walked into her office she was already writing a precription to hand to me, not even interested in how I felt, it was a case of how to deal with me as quickly as possible.
Your Speech Pathologist sounds fanastic and exactly what you need, someone who listens, understands and is able to give you proactive steps in improving matters. I hope you find another Neuro that meets the this same standard. Best of luck.
Julie