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How do doctors determine SFN is NOT ALS or MS?
Neuropathy | Last Active: Mar 19 8:36am | Replies (15)Comment receiving replies
@susan0514 Hi, Susan. I was referred to a neurologist by my PCP at my 6-month check in September. They never called me. So a few weeks later, I called to check on the referral and was transferred to voicemail for the scheduling nurse. I left several messages over the next few weeks. I never got any reply. It seems that ALL the neurologists in my area are in this one big group. My referral from the PCP was re-sent in early January... to a different doctor in the practice. As of today, no one has ever called me. There is another practice of neurosurgeons, but I don't need a surgeon.... I don't think so, at least. I finally found a neurophysiologist who has a practice in a smaller city 45 minutes away, and I have an appointment with him next week. I also called Emory in Atlanta about a month ago, and the earliest appointment I could get with a neurologist there was June, so I made that appointment. I don't know if that neurologist deals with neuropathy or if his specialization may be something else. But he was available, so I took the earliest appointment. Sad to have to travel two hours to Atlanta when there is a large practice right here... but if the practice does not even acknowledge a voice mail or a doctor's referral with at least a card to say "Sorry, we are not making appointments for new patients at this time," maybe they are not the practice for me. ;-( I'm glad to hear things worked out differently for you and you were able to get in on a cancellation. I wish. I thank you for your kind message. This Connect support has been amazing!! Best wishes! Mike
Replies to "@susan0514 Hi, Susan. I was referred to a neurologist by my PCP at my 6-month check..."
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Mike, sorry it took so long to get back to you! In Illinois, even with a referral it is usually the responsibility of the patient to call the practice and say I have a referral, are you taking new patients, etc. I understand from a doctor friend that neurologists are one of the most called upon specialties right now, between the needs of an aging population of Baby Boomers and the huge increase of children needing to see neurologists for a wide spectrum of disorders and conditions. I am glad you called Emory, academic medical centers - teaching hospitals - tend to be a part of, or at least up on, new research, protocols, studies, medications, technologies.
I was so lucky with the person who answered the phone that day at Rush. I have no idea what their job title was, but they asked me a lot of questions about my symptoms and prior tests, and when I hesitated to take the appointment because I wasn't sure I could find a sub for my students they went out of their way to urge me to please, please take the appointment. They told me I could cancel if I had to, but if I waited until I had a sub confirmed they guaranteed me the appointment would not still be there. I made the appointment because of that remark, and when I called my boss she immediately agreed I had to take the appointment and they'd manage somehow.
I appreciate this website too. I was so scared when my symptoms started about 15 years ago, and my neurologist at Northwestern first suspected MS or Charcot Marie Tooth. Fortunately for me a genetic test for Charcot Marie Tooth had recently come out at that time - 2009 or 2010 and it was negative, nor were other tests consistent with MS. For a long time my symptoms receded or were quiet, but the last couple of months symptoms have been coming on like gangbusters and it's been a consistent source of anxiety, uncertainty and discomfort and my fears can take me to some dark places. My April tests can't come soon enough!
I really hope we both have an opportunity to find reassurance and answers this spring!