Nearly 7 months after being diagnosed by my local neurologist, I will finally be seeing a neurologist at Johns Hopkins on Monday, July 2. The university hospital said that this doctor has treated patients with EM, so I am hopeful. My appointment is in the morning, and they've scheduled me for an EMG in the afternoon.
My only fear is that, after such a long wait, I may not make the most of my time with this doctor. Any and all suggestions would be truly appreciated!!
I have decided to ask him about POTS. After reading about it on this site, I realized that it perfectly explains my leg pain and shortness of breath upon standing still for even a few minutes. My husband checked my heart rate on two separate occasions, and when I stand up after laying down it indeed rises a full 42 beats per minute after about 5 minutes of standing, and he said that my legs were turning purplish. What else should I be asking the doctor to check?
Can I suggest writing things down. After waiting 4 years to see a specialist I made the mistake of forgetting lots of what I wanted to ask. I hope it will be a useful visit.
Thanks Laura! I did take my list and the appointment went well. The doctor was a nice guy and a very good listener, plus seemed thorough. I don’t think he actually knows anything about EM, but he was very familiar with POTS and following his exam/tests said that I clearly do have POTS and he spoke to me about treatments for that. He wants me to take a drug called Pyridostigmine in hopes that it will slow my heart rate and help me feel better, and he’s also hoping that it will somehow help the EM also. He’s prescribed more blood work to rule out a connective tissue disorder.
Hi Tullilou, So glad to hear that the visit was useful and it sounds like it was benificial for the POTS more than the EM. Hopefully the treatment will help with both, I just looked up POTS and it sounds horrible, you poor thing having to live with EM and POTS. I find it difficult enough to cope with EM and pain sensitivity but anything to do with breathing must be scary for you.?
I have been diagnosed with EM for six months. I am realizing that various neuropathies seem to be the catch-all for doctors who can't readily diagnose something else. So be careful. As I am writing this I see the date for your doctors visit and realize that it happened just a few days ago. I hope it went well and that you got all you hoped for!
In reading your note, I sense the same fears that I have with my neurologist. I feel like I have to do the diagnosis, which really is his job. My neurologist is really good at treatment, but I sense he is weak at diagnosis. To counteract this I always come to my visits armed with a list of questions that I have written down. The meds I am on affect my memory and my ability to easily recall words or names I don't use frequently. Maybe you are affected similarly by your meds? Write his answers down too. My neurologist is in heavy demand like yours is, but once I got that first visit, follow ups have been easier to schedule. Also, if she or he has PAs that work alongside him(her) find out their names and direct any follow up questions by phone call to them. Give your doctor a list of as many relevant symptoms as you can think of and push them to explain them away or treat them away. BTW, my doctor has me on a lot of meds but the predominant ones that have helped me are neurotin and tegratol. I still have pain throughout my entire body, but my feet which were on fire and debilitating were pretty much cured with the introduction of the tegratol. Best of luck!
It went well. The doctor did not seem to know much about EM, but did discover that I have POTS (Postural Orthostatic Tachycardia Syndrome) and prescribed me a medication to hopefully help with that. He thinks that working on that circulation issue may help the EM too.
Tim, it sounds like you were diagnosed about the same time as me.
Yes, the visit went relatively well. I was hoping for a few more answers regarding the EM and underlying cause, but was grateful the the visited resulted in a clue. The Dr. said that I have POTS (Postural Orthostatic Tachycardia Syndrome) which means that my autonomic nervous system isn't doing it's job to compensate for gravity when I stand. My heart rate climbs about 45 beats per minute and blood pools in my feet and legs. Perhaps treating that will benefit the EM.
What a blessing that the tegratol helps with your burning pain. That is wonderful! Your advice is good. I, too, find that I have to write things down and mentally prepare myself for a dr. visit.
TimR said:
I have been diagnosed with EM for six months. I am realizing that various neuropathies seem to be the catch-all for doctors who can't readily diagnose something else. So be careful. As I am writing this I see the date for your doctors visit and realize that it happened just a few days ago. I hope it went well and that you got all you hoped for!
In reading your note, I sense the same fears that I have with my neurologist. I feel like I have to do the diagnosis, which really is his job. My neurologist is really good at treatment, but I sense he is weak at diagnosis. To counteract this I always come to my visits armed with a list of questions that I have written down. The meds I am on affect my memory and my ability to easily recall words or names I don't use frequently. Maybe you are affected similarly by your meds? Write his answers down too. My neurologist is in heavy demand like yours is, but once I got that first visit, follow ups have been easier to schedule. Also, if she or he has PAs that work alongside him(her) find out their names and direct any follow up questions by phone call to them. Give your doctor a list of as many relevant symptoms as you can think of and push them to explain them away or treat them away. BTW, my doctor has me on a lot of meds but the predominant ones that have helped me are neurotin and tegratol. I still have pain throughout my entire body, but my feet which were on fire and debilitating were pretty much cured with the introduction of the tegratol. Best of luck!
Thank you, Laura, for your support! Yes, the POTS is no fun. But I think my EM is much milder than many on this forum. I can tolerate temps up to 75 and the EM only effects the bottoms of my feet and my toes (bottoms, tips and tops), plus occasionally my hands. I am able to exercise daily (recumbent bike) and the conditioning is very beneficial for the POTS as well as general health and well-being. I just can't stand still, and both conditions make it hard to spend much time on my feet.
I know there are others on this site with POTS as well, and I am intrigued to understand the connection. Perhaps both involve the autonomic nervous system?
lauraflora1 said:
Hi Tullilou, So glad to hear that the visit was useful and it sounds like it was benificial for the POTS more than the EM. Hopefully the treatment will help with both, I just looked up POTS and it sounds horrible, you poor thing having to live with EM and POTS. I find it difficult enough to cope with EM and pain sensitivity but anything to do with breathing must be scary for you.?