What should I request at Clinic tomorrow?

[MupstateNY]

The Clinic convinced my primary to order the cognitive testing. The clinic director submitted the clinical notes for the CT. I asked the clinic director in December if they would mind if I work with Synapticure and they said not a problem. I plan to ask Synapticure how it will work. Hopefully I can cut the cord with the clinic because it doesn't seem to be a match made in heaven.

 

[rmt]

My husband had FTD. While it never hurts to get tested, you certainly don't sound like you have FTD to me! I hope when your FTD tests come back as normal, you can show them to the doctor and tell him to start listening to you!

 

[affected]

My husband also had FTD. I would recommend you submit to the testing, even though I agree you don't present to me here as FTD typical.
I'm so sorry this is all happening.
If they even understood FTD they would not have written to you that way.

 

[lgelb]

If you're moving care to the bigger center, I would make an interventional radiology appointment once the CT is done, to discuss the tube. It's not an everyday procedure for every radiology suite and from their asking for a CT in advance (not the same as a CT-guided procedure), I'm inferring this isn't 100% a typical deal(?) so I would want an interventional radiologist that has done RIGs a few times and also knows when not to do them.

You might think that it's better to stay close for that, but many people travel and if it's done right, there shouldn't be any 4 am glitches. I'm skeptical of the motives of anyone who wants to refer you out generally, but still wants to keep you for the tube (interventional procedures are encouraged from a revenue standpoint,).

So if there's an IR you like at the closer center, it'd be understandable, but it's also fine if there's not or you're not up for the drama. Orders would still be written by your team at the center doing the tube if anything untoward happened.

 

[Tomswife]

Before Tom's Peg endoscopy, NY only needed a blood test. But he did not have RIG procedure. Could not lie flat.

 

[Tomswife]

Mupstateny. My heart goes out to you. These people should be professional and caring; and be able to work with you. You are very smart and an advocate for your own health. Some hcp want easy obedient unquestioning patients. Our local Summit Health neurologist really likes that I am informed. He has told me that. It makes his care easier. Your HCP should appreciate your knowledge and advocacy.

 

[Firefighter58]

I think that you are trying too hard to involve yourself in their profession ,it is natural for them to pushback when you are constantly calling everyone and confusing all professionals involved so in frustration they move you along. It is like calling a tradesman then standing over his shoulder and telling him how to do the job.
Al

 

[affected]

I have found, personally, so YMMV that: if your clinic/doctor/any provider spend the time to explain everything to you and answer your questions clearly it is a good start. If they then respond to requests through the portal it prevents things escalating.

I know that a common strategy is to simply not answer. Most people try maybe once more then give up, so the strategy works most often.

I don't know about there, but here our health service is moving completely to client centred health with clients enabled to make their own choices. It is a smart move because it means people have to be given information and health providers have to be transparent.

 

[MupstateNY]

Firefighter, Shiftkicker and Clearwater, I have never phoned them.

I did not pester them through the portal. I sent them a request for a status report twice a week maximum. If I'm choking on my medication and not sleeping because of mucus problems, then it would be nice if the orders were sent as we decided on 1/4.

I hope your care has included follow-through with the DME, medication, orthotics, etc., you needed.

 

[Mary2]

The clinic in Upstate New York seems as overwhelmed as the clinic near New Jersey. The staff are probably doing their best. Perhaps the ALS clinic model has outlived its usefulness. With the increase in the use of PA's and NP'S in MD offices and the increase in telehealth perhaps the clinic model should be eliminated.

 

[MupstateNY]

When I went the first time in August, with my first EMG in tow, the clinic director told me categorically I did not have ALS. She didn't say that I would need to be watched to make sure. Her office note was consistent with what she said.

When I got the dx in mid-November, she met with me a few days later over telemed, and said, "I was hoping you didn't have it."

When we met in August, every time I tried to ask a question, she would get irritated and tell me to let her finish. And yet she allowed my spouse to ask a question.

He is as supportive as his nature allows him to be, but I'm the one who makes all the phone calls and struggles to learn how I'll need to be cared for. The director never bothered to get to know the whole me in August, as the doctor who had done my EMG had. He listened to what I said, all the different strange things that were going on with me, and my comment, "In the last few months it seems like my body has been falling apart.." He documented my observations and his carefully in his note. She was only seeing my trapped ulnar nerve. She didn't let me say more than a couple words, so how could she possibly have observed my scratchy voice and speech slurring?

She's just not a good fit with me.

She never ends appointments by saying, "What questions do you have?"

When I saw the wonderful pulmonology NP on Friday, she told me honestly, "The DME supplier I'm recommending will be closed by the time I'm done seeing patients today, but Monday morning I'll have time to submit the orders to them."

This director has a totally different approach. I don't care for the games she plays, and I don't care for the way she tried to manipulate my primary.

 

[rmt]

That sounds so awful! Is there a different doctor you could switch to? I'm guessing she is embarrassed that she missed the diagnosis but that doesn't excuse her behavior! You deserve to be listened to!!!

 

[Firefighter58]

You said you never pestered them and never phoned them, now you say you made all the phone calls , and you said that you know what the director's notes said, did you read them? I think you want the director to say certain things and when she doesn't you think she is avoiding you. If you want to learn about this dreadful disease maybe a little more listening and a little talking would be in order, just my opinion.

 

[affected]

Al, maybe read her posts again a little slowly. She spoke on the phone to the social worker.

 

[MupstateNY]

Firefighter, you might be right. You've been in this game a lot longer than I have.

I don't enjoy phoning the clinic. I had to do that in the beginning. You wait with annoying muzak for an hour, and then you have to leave a message anyway. That's why I use the portal instead of the phone.

The director and I decided together what equipment would be ordered. However, it took several weeks for the things to be ordered.