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melab

Member
Joined
Oct 19, 2018
Messages
19
Reason
PALS
Diagnosis
12/2018
Country
US
State
FL
City
Clermont
Hello. I Live in Orlando Fl. I am 52 years young seeking a Neuromuscular specialist in my area. I have been getting passed around from physician to physician for 7 months now.

My Primary care Physician team feels as helpless as I do and they have worked hard to get me answers.

7 months ago I was biking trails, working out and walking about 15 miles a week. NOW I am unable to dry my hair or vacuum without my muscles twitching and it takes substantial effort to lift myself out of my chair. My muscles twitch constantly all over. Both biceps and back feel like i have xray blankets on them. I wake up in the night with my foot and/or shoulder basically jerking. My fingers are slowly become stiffer and stiffer and although I have gained substantial weight due to inability of working out my rings and watch are all too big now on my hands. I have had to decrease cooking at home because when I try to cut up vegetables or food I cut my other hand because I can't control the knife.i I have had every blood test imaginable as well as ct scans and xrays.

My PCP sent me to a Neuro in my area at the very onset of my symptoms. He did an exam and asked me which side felt weaker. Frankly I have no clue but he said I had to pick a side. I did and he tested a few areas and EMG was fine. He said he thought it was autoimmune but I have had every test done already. After a month not feeling better my PCP sent me back to the Neuro. He tested for MG.came out fine.

I was then sent to dr Pulley at Shands Uf for 2nd opinion. MY Pcp sent over all records and requested that he perform a full exam and another emg/nerve study of my right side. I waited 2 months for my appt. Upon arrival and meeting him he informed me he didn't allot enough time for an emg test and that he had not reviewed any of my records. After breaking down crying he said he would fit me into the rest of his appointments to try to test at least one limb and do a physical exam. After 4 hours at UF he tested one limb and found chronic denervation and reduced recruitment in two muscles. He said i had more weakness on my right then left. He told me he couldn't confirm Als yet and to come back in a few months to see how I progress. I have had to wait 4 months for my next appointment with him.

So that said, is it normal to have to wait so long for appointments
And is it normal for Physicians to be so nonchalant?

I do not mind driving anywhere in Fl. Thanks in advance for referrals!!





Mayo clinic is not on my insurance.

Thank you!
 
I suggest you go to the ALS Association website The ALS Association. There is a drop down for local services. You can search by State for for Certified, Affiliated, and other Associated Clinics. One of those should be able to assist you. Sorry about the problems with your existing physicians.
 
First, I would keep my appointment with Mike Pulley. In the meantime, you can get another opinion at the University of South Florida. They have a good ALS clinic with a couple of very good neuromuscular neurologists.

University of South Florida will conduct a very thorough clinical exam. University of Florida's patient portal does not upload EMG tests so you will have to request them from the records department. You can send a written request directly to Dr. Pulley but it might be quicker calling whoever answers the phone at UF Jacksonville and ask for the records. They will send everything, including his office notes, if you ask.

That said, when I first "landed" at Mayo from my local neuro, they did a complete pulmonary function test (took two hours), an EMG, MRIs and tons of blood work. They said "possible" ALS and had me come back in four months. Meanwhile, I went to U of F Jacksonville and they did their own EMG which was pretty consistent with Mayo. Both places had me come back in 4 months. At that point, one said "possible" and the other said "probable." Both said come back in three months. I think that's when I went to Johns Hopkins for another opinion and also University of South Florida. I was lucky because my insurance covered all of it including some genetic testing done at Johns Hopkins.

I know how hard it is to wait and all I can say is that it might be hard to find anywhere that can fit you in until after the holidays. Please do some kind things for yourself like a massage and try to enjoy your days. I found music and meditation helped me when I got anxious waiting. Also, surround yourself with happy people who will support you while you are in the process of trying to figure out what is wrong.

Let us know.
 
Doctor Augustin Joseph on Lee Road diagnosed my wife. Very smart. Professional staff.


Appointments: Ask the doc for a sooner appointment. It's sometimes a matter of opening and busy schedules, but also they consider the medical need--maybe your condition isn't expected to change for a long time or perhaps they're thinking your priority is not as high as you might think. Just ask for a sooner appointment.


Bedside manner: Lots of variables here. Maybe the doc is an ass. Maybe the doc thinks you're an ass. Plus, the doc knows that a worried patient is going to interpret or misinterpret every little nuance, so how much effort should they put into trying to guide your emotional responses? The doc might know they aren't experts at reading your emotional needs and presenting the case accordingly, so perhaps the doc is just going to do a "just the facts" presentation.


Two thing seem to be out of most medical doctor's expertise: nutrition and psychology. There are other experts for those.
If you don't like the doc, find another. But if the doc is very smart, you might want to stay with her.
 
Last edited:
Thanks for the responses. I appreciate the feedback.
 
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