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Posted: Sat Sep 02, 2017 9:10 am
by Sparrow
I recently saw an ENT for a new chronic condition (vocal cord dysfunction). I'd been diagnosed with asthma since my childhood and surely I DID have very severe asthma for many years of my life. My symptoms changed about 3 years ago.

This process of getting "help" has been so complicated. I now will have a new allergist, I have a new asthma doctor who says I don't have asthma (which is hard to mentally process now), I have an ENT, I have a speech therapist. Being that my vocal cords make it difficult to breathe, I am eager for instruction on how to take care of myself.

I finally got in to see this world-reknown expert on vocal cord dysfunction (an ENT) and at the appointment, when I ask questions, he responds with "Hmmm-mmm" and writes notes in my chart. I got no answers. I thought I'd have a follow-up appointment but none was mentioned. I'm going to see the speech therapist for breathing re-training.

I message the office after the appointment saying, "Should I make another appointment? I have questions that weren't answered."

I got a call from a nurse who was so helpful, and answered my questions (tho some answers were ambiguous). Then she asks if I'm taking Zantac 300. What? The doctor never told me to & no order was called into the pharmacy. Well, OK. She also says I'm on Prevacid, which I'm not (I'm on Protonix). I decide to ask for a copy of my visit notes.

What came in the mail was a letter that the ENT wrote to my referring doctor. It says I should be taking nasal atrovent and that I'm supposed to come back in three months to see him again and "All of the patient's questions were answered." It also said that a main complaint was a cough (it wasn't.)

I message the doctor's office again saying that I knew nothing about the nasal atrovent and the follow-up appointment, and that I'm "concerned" about these discrepancies in my understanding of the doctor's orders - that none of this was communicated to me at my appointment.

I've been telling all the doctors that I see about the vocal cord dysfunction that I'm going to be assisting my mother after her surgery and that she has six cats (allergies are a major aggravator for breathing issues with vocal cord dysfunction). My mother's symptoms worsened considerably and I thought it may mean her surgery would get scheduled sooner but she needs a different surgery before this other one and that's still the plan... No dates have been set but the symptom change means things need to start moving along. I tell the doctors that I don't yet know how to manage this situation with the six cats. They 'helpfully' suggest, "Don't go."

I see an allergist at the end of October. I saw that it looks like they scheduled me with the wrong one. I was supposed to see a different one. Just... really?

What really makes me crazy is when doctors make inaccurate statements. The letter the ENT wrote to my referring doctor is inaccurate. It makes him look good, but it's wrong.

I was once "diagnosed" with fibromyalgia by a rheumatologist who wrote a letter to my PCP saying so. That PCP told me I was "just depressed" and pushed anti-depressants on me. The rheumatologist never told me my diagnosis. I requested a copy of my records to take to a new doctor and I found out. I'd also asked that PCP for a sleep study because I was exhausted. She was belligerent with me because I wouldn't take the anti-depressants and shut up and go away. I got treated for fibromyalgia for several years until the sleep meds were just failing me and the (new) rheumatologist suggested a sleep study. I had sleep apnea. Treating that, the fibro symptoms have receded dramatically (I still have widespread osteo, but the pain is localized and predictable, unlike the roaming pain I had before CPAP treatment).

I'm sorry for the long message. I am just in disbelief at how doctors can really impact your health in potentially NEGATIVE ways or just ineffective ways and I guess I needed to vent. Thank you so much for just being here.

Re: Doctors/Venting

Posted: Sat Sep 02, 2017 10:18 am
by SusanJ
Sparrow, so sorry your have had your share of less-than-stellar interactions. I'm afraid that most of us at one time or another have had similar encounters.

When I was having problems with tennis elbow, many years ago, the specialist told me that I had a bone spur. I went back to my PT, who then looked at the notes, and he said, hmm, no mention of bone spurs in the notes. I was on the verge of scheduling surgery with him, based on that comment. I also switched to another PT on recommendation of a friend, and that PT, with the right focus (my upper back and neck) cured my tennis elbow!

Most doctors do their best, but there are some that just don't want to have a conversation. Keep looking for ones that will talk. Ask your friends, in person, on FB, where ever. They know where to find the good ones.

And good luck with your mom. Would there be any way she would allow you to board her cats while you are there? Allergens will still be in the house (clean well, or hire a cleaning service?), but at least the cats won't add to the burden.


Re: Doctors/Venting

Posted: Sat Sep 02, 2017 10:41 am
by WhatNext
Oh I hear you sister.

My frustration with doctors is the result of what I went through with my mother, which is a very long story. Let me just say that in less than a year I took her to 12 doctors. Some were very good and some were terrible. Her last doctor was the worst. I spent three years in Florida (work-related), and moved my mother down there with me. IMHO Florida is a medical hell-hole: the system is broken. I had no choice of doctor for her--I found her doctor through a hospital referral service. He didn't need to have gone to medical school to do what he did: I could have done his job with a cheat-sheet from a pharmaceutical company. (NB: My attitude toward Florida is based on my experience in the panhandle; I don't know whether it's true of the whole state. It was a significant factor in my decision to move back to Virginia.)

Years ago a colleague of mine whose son was in medical school at a very prestigious university (and who is now the chairman of the department of medicine at another) told me that his son described medicine as black magic. He said the human body is a black box--they don't know why things happen the way they do. They're guessing all the time.

I'm an ApoE3/4 65-yr-old woman. I see an ob/gyn every year for the standard tests and that is it. Since learning about Walk-in-Lab I don't need to see a gp to get a blood test. I monitor my blood-pressure with a wrist cuff. Very very thankfully I have no health issues aside from tinnitus and trigger-finger in my hands, which I hope will clear up if/when I ever finish clearing the ivy in my yard :roll: . I take no prescription meds but I take a handful of supplements, many of which I learned about here.

I wish I could tell people to try going off all prescription meds, exercising, and eating the healthiest food you can afford, but I know that's not possible for everyone because of genetics. I have multiple markers for prostate cancer which of course doesn't effect me, but my brother had a real scare--it was at least stage 3 by the time it was discovered and was the most malignant type. Fortunately it responded well to hormone therapy and he's doing well. My father had high blood-pressure all his life: his father was one of 5 brothers, all of whom died between the ages of 49 and 51. So I do realize the need for doctors and prescription medication, which kept my father alive until skin cancer got him at the age of 81. Just keep looking until you find a doctor who will tell you what's going on and answer your questions. Be skeptical of certainty: they're guessing.

P.S. I had two dogs when I moved to Florida and I loved my vet down there. He was an experienced and compassionate doctor and constantly admitted that he was guessing.

Re: Doctors/Venting

Posted: Sat Sep 02, 2017 11:19 am
by NF52
Hi Sparrow,
I wish I had solutions to offer for your "doctors who don't communicate or answer questions" issues. I don't. But as someone who is also VERY allergic to cats, who also worked for many years with great speech therapists, and has a son with asthma, I have some quick thoughts:
*Tell your mother than the cats are going to have to go to a cat "hotel' (i.e. boarding) for the time you are staying with her, because if they don't you may end up in the ER with breathing problems and not be able to help her. It might be expensive, but the benefit should outweigh the cost.
*Have a company come out and steam clean her carpets. Having the cats gone and the carpets clean should make a huge difference in your health while you're looking after her.
*Make sure that the speech therapist you are seeing has experience in vocal cord dysfunction. If not, contact the nearest teaching hospital that has a Speech and Hearing Clinic and ask them for the name(s) of speech pathologists who specialize in vocal cord disorders. I hope you'll find that speech therapists often make as much of a difference in people's independence and health as PTs, and OTs.
* Ask your ENT how she/he plans to help you manage your vocal cord disorder as independently as possible, focusing especially on your "presenting problem" of "hard to breathe" (Sometimes doctors need info given to them in the language they are used to grasping!) Treatment of asthma has improved from "just give them nebulizer treatments as needed" to teaching both children and adults how to remove triggers from the environment, recognize early signs of problems, use preventative medications wisely, and monitor lung function over time. That should also be true now for YOU! Your doctor and speech therapist should be sharing information with each other, and with you. Just getting some objective information like "How much oxygen is getting into my blood?" and "Is my sense that it's hard to breathe a subjective feeling (because of narrowed space in the trachea)?" and "Are my lungs functioning well with the air they get in?" If your oxygen levels are okay, it might help you manage the sense of breathlessness that you feel without panic.
Best of luck!

Re: Doctors/Venting

Posted: Wed Sep 20, 2017 6:58 am
by John Dubya
I suffer from dystonia which is a descriptive medical term for a neurological movement disorder. My head involuntarily turns. I receive Botox injections in my neck muscles. In my meet-ups with other dystonia sufferers I've met some who suffer from spasmotic dysphonia,which is dystonia related to the vocal cords. A possible diagnosis. There is a community out there for the condition.

Re: Doctors/Venting

Posted: Wed Sep 20, 2017 12:49 pm
by jolicoeur
Thank you John Dubya for let us know this possible relation to vocal cords and that there is a community as well.
Welcome to the site. Have you seen the primer in the welcome section ?
If not, you'll discover a lot of details and very pertinent info related to ApoE.
All the best!

Re: Doctors/Venting

Posted: Wed Sep 20, 2017 2:22 pm
by SusanJ
John, interesting you brought up spasmotic dysphonia. My mom had that - she could barely squeak out her words - and it took a long time to be diagnosed. She was given Botox shots in the vocal cords a few times a year. The first time she talked to me after a shot, I didn't recognize her voice at all! It was her "normal" voice, which I had never heard until then.

Re: Doctors/Venting

Posted: Sun Sep 24, 2017 11:26 am
by Sparrow
My father is a barrier to getting the care that I would need with the cats. He asks me if I really think I'm allergic to the cats. I could show him medical tests, but that would be to no avail. He sees himself as "busy, overwhelmed" and the introduction of any change means he shuts down and doesn't listen. Persisting means he'll storm off. He is wholly unreasonable, and I often push my limits just advocating for my own mother's needs (of which she is perfectly capable of advocating for herself, but she thinks "clamming up" is punishing us both -- and creates a dynamic where I end up intervening on her behalf - which happened this morning over a cell phone with a dying battery).

My father doesn't realize his actions are controlling. It can't be pointed out to him. He retires in less than two years, and I'm hoping we can ride it out until then and THEN add the "stress" of advocating for changes in the way things are done. I often feel, as an only child, that I lack the back-up that I really need in order to deal with them both and frankly, it's downright exhausting with my own medical conditions (chronic pain and chronic fatigue). I pick my battles.

I've told my parents every time that a doctor has said, "Don't visit" or "stay in a hotel." Dad won't take on the expense of boarding the cats. Mom "clams up" with me and we've gone two weeks without speaking, which is torturous for me, as my mother and I talk daily, several times a day and she has health problems that deeply concern me. Talking about it has my eyes welling up. A few years ago, kidney failure put her into a coma and ever since then, I've wondered how long I'll have my mother.

I'm not asking anyone to solve these dynamics... just to understand if I seem resistant to taking advice. As with most families, there are dynamics that are deeply in-grained, strongly entrenched and from the inside, seem impenetrable. I have a therapist that I started seeing since I decided to no longer be in denial about my APOE4 status, and I talk with her. I won't say I'm one to be easily overwhelmed, and I'm darned stubborn... but my parents... well, I love them and value them, but they are aging me. I'm surprised my hair hasn't fallen out. LOL!

The speech therapist has been a real blessing and she's given me a way to deal with the vocal cord issues. It's going to be tiring to be at a constant battle the first time I go down there again without prednisone. Maybe my parents will see and understand. They think that prednisone is the answer and are angry that my doctors will not provide it. The most I'll hope for is for my father to vacuum ahead of my visit and run the air cleaner while I'm there. For awhile, he insisted that the air cleaner was causing the house to heat up. I'm quite vocal in explaining my immediate needs, though. He did acknowledge that I do seem to breathe better when he runs the air cleaner, and that vacuuming does seem to help me (oh, amazing!!!! Who'd have thunk it?)

I'm 38 years old. Getting older by the minute when I fight with them.

My father was abused by his father, and some of his irrational behaviors are probably defensive in nature. It's why I try to be understanding when it might seem like I should be reacting differently. The amount of patience and energy involved is, at times, monumental. And I don't have either at times -- particularly energy.

I'm going to pause and read some responses. Please be forgiving of my frustrations and seeming lack of action.

Re: Doctors/Venting

Posted: Sun Sep 24, 2017 11:47 am
by Sparrow
Wow, so sad about Florida being a rough place to get healthcare. It's sobering, knowing that a lot of older folks retire to Florida, and I imagine that at least some are like my aunt and my father, who do NOT advocate for themselves! I wholly believe that this may lead to pre-mature death and disability and I pray that I never lose the ability to advocate for myself with doctors. I've seen how detrimental it is, and how tiring it is to fight. Well, it is all the more important that I try to prevent Alzheimer's through the means I learn on the forum here... I'm so grateful for folks here!

I am slow to respond because I feel like I can take the forum on in very, very small chunks. I've come a very long way, emotionally, in dealing with my APOE4 status and I'm being gentle with myself. I have a curiosity and when I initially learned my status, I tried to do Google searches. I found some terrifying articles that didn't offer hope and that amplified the fears I had to a point where I became pre-occupied and felt things were out of my control, but I couldn't seek support because I was self-conscious of how I burst into tears in the privacy of my own home when I was just THINKING about APOE4.

I'm not one to get depressed and feel hopeless, either. So, that in itself was terrifying to me. And that's why this board is all the more important for me! So, I take it in slow chunks because I'm still mentally working through things, but I'm making very positive changes for my health in the meantime by adding healthy fats to my diet, losing weight and trying to be more active. I'm also listening to TEDTalks and audiobooks and watching documentaries -- I've always been hungry to learn new things. I hope that's the right direction to go in. I tried getting started learning a new language but I'm changing so many habits right now that I can't go there yet. I have a hard enough time focusing on multiple things that I need to for work and diet/exercise. Before I got sick with the chronic fatigue/chronic pain, I think I could have taken on the world... but for now, I have to make baby steps when it comes to change. The cognitive issues from the fatigue really impact my ability to even REMEMBER to engage in new habits! I slip into "auto-pilot" and am now working on mindfulness to try to combat that.

I know they're guessing all the time when it comes to the body/medical treatments. I used to think doctors were Gods, that they had all the answers and that I just had to know the questions to ask. That was before I had chronic health issues. Now, I just try to find the doctors who truly WANT to help me and who will do their best to do that. I am a heavy user of prescription medication. I respect people who don't go that route, but I remember what it was like before I took this path and before I had a diagnosis. I was sure that I'd be found laying in a parking garage, passed out, because I was pushing myself as hard as I could every single day.

I use natural remedies and behavioral remedies as well, but my medications allow me to continue working. If I wasn't working, I'd be doing things differently. As it is, I'm pushing myself really hard to meet the demands that allow me to maintain an income which provides for my medical care. It's a bit discouraging so I try not to dwell on that. I spend a lot of time reading, talking to other patients who have similar conditions and being purposeful about my health decisions.

There are some things I won't get an answer on until the time comes... or perhaps never. A skin biopsy of a re-occurring rash suggested "early connective tissue disease" and "possibly Lupus." Until more symptoms show up, or until the rash reappears, we don't get another chance to solve that puzzle.

I love it when doctors say "I don't know." In the past, other doctors have taken their frustrations out on me instead of just admitting they don't have an answer.

Re: Doctors/Venting

Posted: Sun Sep 24, 2017 11:56 am
by Sparrow
My speech therapist is hugely informed. The ENT is unhelpful and I've decided he's not going to be part of my care team because of his failure to communicate. I don't need that frustration. I don't know if I need to find a replacement for him as long as my speech therapist fulfills such a huge role for me!

I also feel that it's so important for patients to be educated about their conditions and empowered. I was thinking about that this morning, and about the doctors who have made a difference for me.

John Dubya,

I don't know that I have any other symptoms that are dystonic in nature. I do have muscle spasms but they can be related to a different disorder. I *just* recently learned that Ehlers-Danlos affects 5 members of my mother's family and that seems to match up with the early onset osteoarthritis that my mother and I both have, along with possibly the muscle spasms and soft-tissue pain. It's something I'll be exploring soon. I have cervical spondylosis and I think it impacts the muscles in my neck, upper back and possibly by extension creates tension internally in my neck (!). The ENT said "oh no, that's not likely" but the speech therapist said she thinks there's a connection. I'm glad you found a support network and got a diagnosis! It's very empowering to be further along in being able to get the care you need and support you need, too!

Thank you to all who responded. I'm sorry for my delayed and lengthy responses and appreciate your help, support and patience!