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!
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!