At a stand still...

[Kerbear]

All of you are very smart and I am not sure how I should approach my neuromuscular doctor. We are very disappointed in the clinic we are using. The first major problem happened in November after a clinic visit in October there was talk of a muscle biopsy the nurse called me and asked me to come in for a 4th emg to help guide the surgeon, we got there in a gown and soaking hands and feet in not water when the attending that day came in and said sorry but we don't need a new emg as if I had asked for another.. She apologized that noone called us, we were irritated it is a 1.5 hour drive but mistakes happen.

My next clinic visit was in January we knew there were significant changes such as speech swallowing breathing and atiffneas/spasticity. We started with my drs NP and she did the exam and said she needed to speak to a couple people and would be back she came back with a Dr I have never met but later found out he is over the als clinic. He examined me had her do a spirometry test lungs are good, the other that tests diaphragm was low 10 14 9, so he told them to order modified barium swallow a head MRI as I hadn't had one since 2012, and to be back in one month. He told her to send my file to his office and looked us in the eye and said we will get you a confirmed diagnosis. He also looked at my 3 emgs.

Now we have been told mnd but pls as I do not have significant muscle wasting, also that it is pls after 3-5 yrmears of not being als. Confusing but I think we understand.

I also understand that only my dr. Should report to us any diagnosis or information that is important so they had us come back Friday .. Guess who was not in the building or available... My dr. So the NP apologized and said she would call Monday or Tuesday ...

As a sad note my barium swallow showed deep penetration with aspiration and I am now thickening my liquids honey thickness. I know there is zero cure or treatment and that I am on baclofen, but I have been told that speech occupational and physical therapy however only my Dr can order it. Is it time to ask for a new Dr or is this typical??? From what I read many have the same issues?

 

[Nikki J]

It does not sound typical no. I have had appointments rescheduled more than once and so has my sister who goes to the same doctor/ clinic. However I was called before the day.

It does sound as if these are things that probably would not happen if you are in routine follow up. I am guessing here but suspect the most recent event happened because they wanted you seen at short notice, the doctor had no openings and you were scheduled with the np at a time the doctor was also supposed to be there ( I have had this scenario). After the appointment was made the doctor had a schedule change but your appointment was not flagged for a call as it looked like it was with the np hence the wasted trip.
Should you change doctors/ clinics? Depends on how much you like things there and what your other options are. Another thing to consider is the starting over again and how much that might set you back on the diagnostic path

 

[KimT]

Sorry you went through all this. You didn't say where you are going but is Emory or Mayo Clinic In Jacksonville an option, at least until you get a proper diagnosis, get your baselines measured, and insure proper immediate care?

 

[Kerbear]

Thanks for the insight, no I do not want to start over and had not even considered what that would mean. I am just going to ask a couple questions and be specific and keep it to the most important.

Our aunt has moved in and is such a great help. She has survived lymphoma and cared for our grandmother so seems to really understand how to help me and ask questions she has now been to 2 clinic appts and all of the testing lately which was spine and head MRI and modified barium swallow. The speech pathologist has been the most helpful person we have seen so far. Seemed like she could help if I can figure out who orders that.

 

[Kerbear]

We go to Emory

 

[lgelb]

If you have been diagnosed with PLS at Emory, it's doubtful that somewhere else would "undiagnose" you. You should feel free to check out other clinics.

If you like the SLP, why not call or e-mail her and ask what to do, to avail yourself of her services, or what her suggestion for proceeding is?

 

[Kerbear]

No nothing is going to be undone and after reading all of the messages here with Nikki's being exactly what I think happened I have let that appointment go down as being overlooked.

I am trying to keep my perspective in tact because things have really progressed since October. I may never be good at accepting things as they are but that is what has gotten me this far.

How would I word these three points without being disrespectful I have instant messaging capabilities with my Dr and her staff.

1. The speech pathologist stated to us that I could receive beneficial help from therapy, and would order it? Where are we at on this?

2. I am concerned with my inability to breathe laying down when and how will this be addressed

This 3rd part I need help with how do I ask what their thoughts are? As in all the things we have eliminated, what they are seeing on exam, and what the emg really means.

The most recent emg showed muscle membrane instability with positive fibrillation potentials, and denervation. The NP read that to me I had never seen or heard that. It said that cramp fasciliation syndrome was ruled out, and myotonia.

 

[Nikki J]

1 As Laurie said if you have a good relationship with the SP that is a good place to start. Maybe something like I was happy you thought I could benefit from some therapy and am anxious to start. Is there anything I need to do to make it happen or are you working on it for me? Thanks so much for helping me

2 is there a respiratory therapist you are working with? If not this probably goes right to the doctor. Has this been discussed with anyone? But something like I am really scared about my difficulty breathing when I lie down. (Then if true)it seems to be getting worse, I have a headache in the morning and seem so tired. I have not yet had a sleep study or had breathing tests lying down.

3. It sounds like your questions are perfectly appropriate I would phrase it where are we in the diagnosis process? What is still in the differential? Can you explain what you saw on the EMG and on my clinical exam and what it means as far as being able to make a diagnosis? You might preface it or end it by I am really confused and scared and it would help me if I understood better

How much emotion you put into this depends on your relationship with the doctor and your personal style. Everything you mention is perfectly reasonable and should not offend anyone asked in a factual manner without any of the fluff. I usually do the factual myself but recently found a touch of the emotional ( real not feigned) triggered a more direct and informative answer than I got before. Your mileage may vary!

 

[gooseberry]

Most clinics have a coordinator. You could direct your questions in an email to them and say you would like a telephone or in person appointment to address your concerns.

I would never leave an appointment until your concerns are addressed. If uou do mot u derstand a report have them explain it in plain speech not medicalese. Always ask, before you leave, what is the plan and who will do what. Whoever is going with uou can keep notes. If they do not meet the timeframe, call. Your breathing really needs to be addressed so be aggressive in why you need the appointment..

 

[Kerbear]

You guys are so helpful, thank you so much. I am going to do both ...

 

[Nikki J]

Another thought. Does Emory do televisits? A televisit with the doctor might happen more quickly than a real visit and would be infinitely easier for you