Well I guess I’m gonna have to be an even more squeeky wheel and demand an mri and neurologist consult sooner. I can’t wait 1-2 years! That’s ridiculous! That’s fantastic that you have your MRI coming up Kelx. Hopefully you get answers finally. I know what you mean about your life revolving around the Internet searching for answers. I feel like everything is on hold with me as this pain and uncertainty has taken over and is consuming my life.
It sounds like figuring out if there is nerve involvement and what medications work for what nerve issue is a whole other issue in itself. I can see why some people have had to wait 5 or more years for a diagnosis and treatment plan. Thank you all for letting me vent and ask questions. Since I’ve been coming to this site I’ve learned a lot and have appreciated the support every one gives each other. When you have no where else to turn to for help this support here is huge! Thank you XX
There can be side effects with the medications, but not everyone has them! I'm on a low dose amitriptyline, and other than making dry mouth a bit worse, I don't get other side effects. Usually these medications work at low doses, so side effects are minimal. The Amitriptyline helps me sleep too, which was a big problem with the nerve pain... It's good to be aware of possible side effects, but when pain reaches a certain level, it's worth a try anyway!
I know what you mean about playing doctor- I've been round and round in circles... but reading up as much as you can like you're doing Colleen and Kelx helps to know what to ask the doctors about.
Kelx, I hope that you can get an MRI and that at the very least it will help put your mind at rest about something sinister. Have you had blood tests for thyroid function?
Kelx said:
I was prescribed all those drugs and then did research on them and decided living in pain was better than taking dangerous medications lol I know I'm stubborn as hell!!!!!!!!!! I want an answer not a bandade and they always seem to want to prescribe but not fix the problem. My hyoid bone doesn't hurt so it can't be that for me. I'm so scared I have cancer and it is small so it won't show up yet lol. I'm not sure if it can be diagnosed in a ct scan. Maybe research it abit more on the Internet. I think pressing on the hyoid and university the thyroid cartilage confirms it if it causes a lot of pain. I tried that and it doesn't hurt, my pain is much lower down lol
Yes I get blood tests done every six weeks. It’s normal
Would the neck ct with contrast show nerve issues? How is something like that diagnosed? I’m writing all this stuff down you guys so I can ask my doctor next week. And Kelx, yes I get ringing in my ears, tinnitus I guess it’s called. It’s so annoying! I’d be amazing if I never had any body parts from the shoulders up!lol
No, nerves don't show on a CT I think. Sometimes that can be seen with an MRI; there's a new one called Fiesta MRI where they can look at more detail, it's especially good for looking at the nerves in the skull base area. But I've not heard of anyone having it for ES, I found out about it when I was reading up about Trigeminal Neuralgia. But I reckon it would be quite helpful for ES related complications. I would imagine you'd need to be seeing a Neurologist to get referred for one, which again will be a long delay... I think with nerve pain doctors often try different medications, and if they help with the pain then that's your diagnosis- worked for me anyway!
Thank you Jules for that information. I’m going to start with asking about the medication first but really push for the Neurologist consult as well because my doctor put me down as non urgent and that wait time here is 1-2 years which is crazy.
Wow then expect at least 3 year wait if its non urgent....My semi urgent was a year wait for a MRI...I would push push push....keep making appointments till her head spins...
I am probably what is considered a nuisance patient at this point with my gp anyway right now. But when you know in your heart something is not right how can you just except an anxiety or GERD diagnosis? I will keep pushing for answers like all of you are doing.