Doctors/Venting

[chrissyr]

My mother (who is in moderate stages of Alzheimer's) has had a hoarse voice for the past 3 months continuously. Her doctor and ENT have prescribed prilosec. She is still on it, but there has been no improvement. Then he tried an anticholinergic nasal spray, which also is not helpful. So I'm interested to hear about the botox shots and alternate diagnosis! He did mention speech therapy could be an option but he didn't sound too hopeful, and I guess I didn't feel like it would help her either. The hoarse voice is a definite quality of life issue as people have difficulty hearing her, so she talks less.

[SusanJ]

chrissy, my mom went to an ENT-otolaryngologist, who diagnosed and treated the spasmodic dysphonia. Might be worth asking the ENT about it next time - just say a friend's mom had spasmodic dysphonia and it seems similar to what your mom has, and see what the doc says.

[circular]

Sparrow hang in there. Through persistence and good fortune things can get better with docs. I'm on my fourth (4th) primary care doc in less than a year. After my first of these four failed to get three specialist referrals to the specialists before my appointments (with minimum three weeks and multiple reminders to do it), I finally settled on another doctor (all the recommended ones weren't taking new patients). This required me changing insurance plans first. I had the second one for five months and she was quite good and supportive on the CIRS aspect of my journey, but we weren't the best fit for personality, but okay. Then I got a letter she was moving. I just stayed with her office partner for simplicity. Saw her once and she was only fair. Then I got a letter that she was leaving. Back to the drawing board, which at this point means researching local doctors on the internet and hoping for the best based on very little. But it seems I got a winner! When I told her I was very focused on my brain health due to risk of Alzheimer's, she suggested I get tested for my APOE status . Oh my, and in a conventional setting! She immediately understood and appreciated my medical needs around other things I deal with that most PCPs are like, 'Oh, well, good luck with that!' She also reassured me without prompting that she was not going anywhere. I nearly burst into tears when I walked out of there, and again as I type this. I don't expect she'll want to do everything I'd like, but I feel confident she'll make a lot of good decisions for me.

So it's a loooooooooong journey, and I'm leaving out many years of convoluted problems with the 'system' before this latest, but this is to say that like so many others, I get what you're talking about, and maybe my story offers a ray of hope

[SusanJ]

Congrats, circ! Hope your new doc continues to be a winner.

[circular]

Thanks Susan, so do I.

[Orangeblossom]

Hi there Sparrow, I have PHN (post shingles pain) which can be quite similar to fibro pain and have a depression diagnosis in the past. I understand what you mean, sometimes the docs can put the pain down to being psychosomatic and it makes you feel as if they don't believe you; it can be compounded by the prescription for antidepressants. however, some ant-ds do help with the pain and that is not a psychological thing, they do actually reduce the pain. For example amitryptilline is used a lot for chronic pain. I found exercise such as swimming really helped. as well and actually some of the supplements for APOE4 and things recommended on here such as the low carb can help. Maybe we can develop a holistic approach to help us with all these things together? Kind thoughts and hope the docs get better soon.

[Sparrow]

circular, I'm glad you got the help you need. I've had similar experiences of tremendous relief at finding a doctor who is helpful.

I now have multiple health conditions, multiple medications and (allergist-diagnosed) food allergies/environmental/material allergies. I'm 38 years old, and I've run into a recent bout of not making the right connections. It should get better and my PCP seems supportive, but I'm engaged with an ongoing saga with a pulmonary clinic and it's impeding my ability to receive care for acute conditions.

I think I may have to file a complaint, but I am gathering my records first. I can't believe I'm in this position. I'll persist, because I haven't much of a choice otherwise.

I appreciate the hopeful story. It is a reminder of how far I've come and that hopefully this is simply a storm that will settle down in time.

Orangeblossom, I do understand the role of anti-depressants but my diagnosis of fibromyalgia hadn't even been disclosed to me. It was in my medical records and if things had played out differently, I likely would have continued to receive treatment for depression rather than other therapies that have been beneficial (trigger point injections, tramadol, baclofen, lidocaine, TENS unit). I would not have been empowered to learn about sleep hygiene, epsom salts/warm water therapy, massage... all the other self-care methods that I've applied because I'm motivated to help myself feel better. There is an empowerment in having a diagnosis, in connecting with others who have a diagnosis and in being an active participant in decision-making. As a side-note, I'm taking Prozac for migraine management and for menstrual symptoms (PMDD). I'm not opposed to anti-depressants, but I want to be an active, informed participant in my healthcare management. I believe that had I not been empowered by learning about my health conditions, I wouldn't be taking steps that are permitting me to continue to work full-time. The scope of what would have been "taken away" from me is hard to describe.

[Orangeblossom]

Yes, that was not helpful was it, I see what you mean. I am glad you know of it now but shouldn't have had to go to that to find it, should you? I too am taking Prozac and have been on and off for many years. I have found I am better on it than not. I also had amitryptilline in the evenings for my PHN as well but trying to stop that as feel it is too much together. I too try and use other things such as exercise, heat I find helps too (with pain) Kind thoughts - I do understand what you mean.

[Foxfors5]

Sparrow, I am curious about vocal chord dysfunction. I know nothing about the subject. Do you ever have laryngospasms? where you can't breath? Scary stuff.

[Korie]

Sparrow, I'm so glad you reached out to the board with your experience. It looks like you are getting a lot of great support here

I will echo what others have said in that being your own advocate and having persistence and determination will go a long way. Personally, it took me 4 years, seeing the ENT's, speech therapist's, and neurologists to get an accurate diagnosis of Spasmodic Dysphonia which is a form of dystonia in the movement disorder category where the vocal muscles spasm. In my case it leads to my voice being strangled or 'cut off' with certain words or phrases.

During the 4 years I went from dr to dr I had to, on multiple times, stand up for myself as a patient and demand alternative methods of treatment and diagnosis. It can be exhausting and having a strong support network with you when you have dr's appointments can be a huge help.