Can anyone advise me about which type of doctor I should be seeing for the EM. I was initially diagnosed by a Vascular doctor, she prescribed the gabapentin. I saw her one more time and she felt she didn’t need to see me anymore. So what do I do now, I have an appointment with a Neurologist next week, would he be of any help? Since I have cancer also I may be getting some benefit from my pain medication for that also. I take about three different medications for pain.
I’m looking forward to making friends here and being a friend. I know my case of EM isn’t as overwhelming as some others here but I’m sure I can relate to someone.
Thanks for any input you can share
Tina
Hi tina, sorry to hear that you’re having to deal with cancer on top of EM… I have seen so many specialists but none of them regularly apart from rhumatology… It seemed like once I’d been diagnosed I was forgotten and left to my own devices, if the pain got worse my doctor just increased the Gabapentin. I went to a walk in centre last week because of chest infection and he said because I’m always poorly he thinks my primary condition is auto immune related so suggested I get referred back to the hospital. The problem being because EM is so rare nobody seems to know anything about it where I’m from. I hope you find the answers you need…!
Thanks for your input. How much gabapentin do you take a day? I hope you get some help for the chest infection. I’ve had a terrible sore throat this week, I thought the antibiotics were kicking in but I woke up feeling sick again and now my ear is hurting too. Guess I’ll be calling the doctor on Monday.
My antibiotics aren’t working either, was sent to hospital on Friday for a chest infection because doctor is concerned about the amount of pain this is causing plus the constant violent coughing. They’re checking for pleurisy, infection in my lungs or broken ribs. I won’t get the results until next week to so until then its bed for me because i can’t even sit up without the cough getting much worse.
I take 5 x 300mg Gabapentin daily but started on much lower dose. How much have you been prescribed…? I also take asprin which helps to thin the blood, have you tried this…?
Wishing you speedy recovery x
Good Morning!
I've been awake since about 3:30, my throat has been hurting and I really wanted to get up and have a cup of tea but I have medication I have to take on an empty stomach at 5 a.m. so I had to hold off. I worry about the cancer spreading to other places with every new ache or pain. Its hard not to be paranoid. Did you have a chest x-ray or a cat scan of your lungs? Its funny but I have never had a cough with this lung cancer. I hope its something that can be taken care of with just medication for you and you'll feel better soon.
I take 600mgs. of gabapentin 3 x a day. I used to take a low dose aspirin everyday but that was discontinued after I had a suspected brain bleed. But my radiologist thinks that may have been a misdiagnosis so maybe I can use aspirin again during my next flare. I hope you can get some rest, I know what its like to be bed bound at times, I've learned to just go with the flow. Keep in touch, I'll be anxious to find out how you are doing.
If the gabapentin isn't helping then you need to go back to the Vascular specialist. As EM is a vascular disease that is going to be the best person to see. If she cannot help you, insist that you are referred to someone who can. EM is very rare so even many vascular specialists aren't that knowledgable about it. Have a look around on this site to see if there are any doctors near you that others would recommend. Don't let them fob you off.
I'm really sorry that you are having to fight cancer along with having EM, If your pain meds are helping with the EM, ask if you could get an extra dose for when you have a flare. I hope that you get some relief with this, you have enough to cope with.
Thanks for your input starsmurf, I'm going to get my family doctor to set me up with another appointment with the Vascular doctor. I believe the gabapentin does help some but maybe it would work better at a higher dose. I'm interested in talking with her about lyrica also. Thanks again.
Hiya, so sorry for late reply Tina… I’ve not been great but seem to be on the road to recovery, my chest is easing up a bit but still in tremendous pain where I popped a couple of ribs out of their joints… My chest xray showed no sign of infection in my lungs and a healthy heart so that’s one good thing. I am going to have more bloods to check for auto immune problems in a couple of weeks.
How are you feeling now…? Did you manage to talk to the doctor…? Do you mind me asking a question just out of curiosity about what came first, the cancer or the EM…? Hope you’re all keeping well x
Hi Tina
I saw my consultant, who is a world expert on EM (I'm very lucky), on Tuesday and she's going to try me with gabapentin plus oxycodone and if necessary carbamazapine. There are many cases in EM where drugs that have not been effective seperately are effective in combination, so we're trying ones that have failed in the past and hope they'll work this way.
starsmurf said:
Hi Tina
I saw my consultant, who is a world expert on EM (I'm very lucky), on Tuesday and she's going to try me with gabapentin plus oxycodone and if necessary carbamazapine. There are many cases in EM where drugs that have not been effective seperately are effective in combination, so we're trying ones that have failed in the past and hope they'll work this way.
Hi Laura,
I hope the medication works for you. Right now I’m bouncing back in forth between the EM and the Raynaud’s. Plus I have my scans this month to see if my new cancer medicine is working. Never a dull moment here.
Take care and let me know how you make out.
Tina
I will keep you posted Tina. I hoped you could suggest something similar to your own doctor, in order to get some relief.
I really, really hope that the scans show good news.
Tina said:
Hi Laura,
I hope the medication works for you. Right now I'm bouncing back in forth between the EM and the Raynaud's. Plus I have my scans this month to see if my new cancer medicine is working. Never a dull moment here.
Take care and let me know how you make out.
Tina
starsmurf said:
I will keep you posted Tina. I hoped you could suggest something similar to your own doctor, in order to get some relief.
I really, really hope that the scans show good news.
Tina said:Hi Laura,
I hope the medication works for you. Right now I'm bouncing back in forth between the EM and the Raynaud's. Plus I have my scans this month to see if my new cancer medicine is working. Never a dull moment here.
Take care and let me know how you make out.
Tina
Sorry I got you mixed up with Laura, I sometimes have a hard time following the discussions. Especially since I'm working with diminished brain power because of radiation. lol!
Don't worry, I figured it out.
I imagine all the pain meds aren't helping your memory either, you still seem to have plenty of brain left.
Haha.... Glad to see I'm not the only one who makes silly mistakes, I seem to be doing that all the time lately..!!
I hope everything goes well at your appointmet to see if cancer treatment is working, I will keep my fingers crossed for you.Tina..!
Starsmurf, I've got an appointment tomorrow morning with gp tp discusss my medication as gabapantin doesn't seem to be giving me all the relief I used to get..!! Maybe I'll look into the meds you're being trialed on and suggest something similar if my own gp doesn't have any answers... Although I think he'll probably just up the dose of gabapantin again... (more days of blurry minf) lol I also meed to talk to him about the pain I've been experirncing in cold weather which then sparks an EM flare as soon as I go into the warm...!
Keep me posted on how things are going both of ou..!! xx
Yes, your Neurologist should be helpful. In fact, they should be the one following your EM and providing RX. My Neurologist is the one that is taking care of my EM and Rx.
Charl