What type of doctor manages your EM?

General
1

I am newly diagnosed and spent December 2011 through February 2012 going to various doctors and having tons of tests done (looking for and ruling out primary causes).

The rheumatologist asked me who was going to manage my EM? As I was just starting out, I had no clue. I currently have a follow up with the dermatologist who initially diagnosed me and with the rheumy who will no doubt be watching for development of a primary condition.

So my question to you guys is this: Who manages your EM? What type of doctor do you see for this?

Thanks,

KC

2

I am seeing a neurmuscular doctor. Who knows

Dale

3

My neurologist diagnosed the condition and ultimately passed me on to a physiatrist specialized in pain management.

4

I'm sorry about your diagnosis, but don't despair. I use my Neurologist as my pivot doctor and I see a doctor in the university hospital Pain Clinic to help me manage the EM pain. All the doctors I see are in the same university hospital which makes it great for communication and medical records. For me it's kinda like one stop shopping; if there's ever a problem or need I can use one source to get me to the right doctor.

5

I think I slipped through the net, I was diagnosed by my gp who sent me for loads of tests at the hospital. The Rheumatoligist confirmed the diagnosis and did further tests... I was then just left to my own devices requesting repeat perscriptions. When things got much worse end of last year I was referred to pain managment clinic who will now be trying to manage my pain. He is also going to try and find a specialist in the uk for me me to be referred to even if that means travelling across the country for appoinments.

I have noticed on here that people have yearly app in the Rheumatology department but I have only had the one..?? I would love to find out if others have regular specialist app too..!!

6

I saw my pain management doc last week who with a DX from a Derm is now sending me to another Rummy, Neurologist and vascular surgeon at Stanford....does it ever end? I am on year 5.

7

I to would be interested in the answer to this question.

Dale

8

Hello... Well, for now I have a Dermatologist that originally diagnosed me who is treating me as well, but I have an appointment with a Rheumatologist at the end of the month. I have Lupus as well that has been in remission for about 15 years though, and I hadn't seen anyone for that in quite awhile. So far though, the blood tests and compliment levels they did to check to see if anything appeared to be active have been normal though...

9

Ahhh, this one is easy. You will manage your EM better than anybody in a white coat, those are your assistants. You may have as many of them as you want, listen to them all, weigh what they say. My number one go to guy is the big "G". Yup, Google! My neurologist is on the assistant list too, but he is closer to the other end. (edit) Didn't mean to sound snotty, it's more like he has taken me as far as he can and it's a pain management issued now.

10

Lol Barry, I totally agree with that… I actually basically self-diagnosed myself after a few months of dealing with the symptoms and Googling it… Funny part is, my dermatologist actually Googling it too and was using the info from Wikipedia… Lol

11

Have had this damn disease since 95 and still have yet to be officially diagnosed...my gp has sent a request for me to see doctor at Sunnybrook Hospital in toronto that another sufferer recommended here...still waiting for an appt....he is a dermotologist, but is treating someone already with this disease so that is why I want to see him.

12

I was diagnosed by a neurologist. I see a rheumatologist, neurologist and dermatologist on a regular basis for my EM/Raynauds. I am going to go see a Vascular Surgeon next month. I think the key is finding a doctor or a group of doctors who are willing to listen and experiment with treatments in order to find what will help your EM.

13

went from neurologist to a pain managment doctor. i find a healthy diet with gabapentin is the best i could ever do.

14

Usually patients have a primary Dr. who oversee are total body health. In my case I have a Dermatologist a primary Dr and a Pain Management Dr who handles my EM.

Tawna

15


Thanks for you post. My doc recommended exactly the same set of specialists. Hope? :)


akf32 said:

I was diagnosed by a neurologist. I see a rheumatologist, neurologist and dermatologist on a regular basis for my EM/Raynauds. I am going to go see a Vascular Surgeon next month. I think the key is finding a doctor or a group of doctors who are willing to listen and experiment with treatments in order to find what will help your EM.
16

...and don't even worry about the dx. My gm will not diagnose it further than peripheral neuropathy as the protocol is the same. My doctors are feds, what a funny bunch. They lower their voices when talking about medical marijuana.

17

It sounds like we're kind of all over the board and the right doctor is the one who is most familiar with it.

I loved Barry's reply that we are the one to manage it. So far, I have become very knowledgeable about it... studying everything I can find.

Thanks for all of your feedback!! :-)

18

I am new to this group and I can say that I 100%agree with the statement that we have to be the one to the research and come up with suggestions as to what might work. I’m wondering if there is a place here on this site where people are able to post some of the information they have found during their research so that we can benefit from it?

19

If you ever get to that Dr. at Sunnybrook, please let me know. I'm in Toronto too. What's the Dr.'s name?



Bingolover said:

Have had this damn disease since 95 and still have yet to be officially diagnosed...my gp has sent a request for me to see doctor at Sunnybrook Hospital in toronto that another sufferer recommended here...still waiting for an appt....he is a dermotologist, but is treating someone already with this disease so that is why I want to see him.

20

Lynn, the doctor at Sunnbrook's name is Dr. Scott Walsh ..he is in their clinic there...if I don't get an appt soon just going to call and go through the clinic...Sunnybrook Health Sciences Centre, Division of Dermatology (he is a dermatologist)M1700, 2075 Bayview Ave. Toronto M4N 3M5..phone 416-■■■■■■■■...my doctor says he sent a request but asked me to resend him the info on dr, walsh so not going to wait much longer. let meknow if you get an appt.



Lynee said:

If you ever get to that Dr. at Sunnybrook, please let me know. I'm in Toronto too. What's the Dr.'s name?



Bingolover said:

Have had this damn disease since 95 and still have yet to be officially diagnosed...my gp has sent a request for me to see doctor at Sunnybrook Hospital in toronto that another sufferer recommended here...still waiting for an appt....he is a dermotologist, but is treating someone already with this disease so that is why I want to see him.