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DiscussionChronic Pain members - Welcome, please introduce yourself
Chronic Pain | Last Active: 9 hours ago | Replies (7067)Comment receiving replies
Replies to "I have all the symptoms of ACNES , basically neuropathic pain, as you indicated. Upon movement..."
@horthog
My heart goes out to you for the awful predicament you are in. To be in so much pain and not be able to get any professional help? Sounds bleak.
Yes, most people here don't have much knowledge about things outside the US. I also think our news media blocks info they don't want us to hear and they downplay how bad socialized medicine is elsewhere (it's taboo to discuss political views in our country so that is all I will say about that).
I just found a really detailed webpage on ACNES that you might have seen but if not it has amazing drawings of the muscles in the front torso and abdomen as well as all the nerve networks in the abdomen. It also mentions some of the tests that may be proffered to you that are a waste of time. If you want to read it, it's here: https://www.aafp.org/afp/2018/1001/p429.html
An interesting quote from this page says:
"Because of physicians' unfamiliarity with abdominal wall pain and concern about the consequences of missing serious pathology, evaluation is often misdirected toward costly and unnecessary laboratory tests, advanced imaging studies, consultations, and frequent clinic visits. Patients may be exposed to unwarranted invasive procedures such as endoscopy, laparoscopy, or cholecystectomy."
So maybe not being seen by an MD there is a blessing in a way. In the situation you are in you are doing the best thing you can do, which is your own research. BTW, in the UK do you guys have legalized marijuana for pain there? That could be helpful for you as you wait to talk to pain docs there. Try Mayo in London as Colleen suggests. I didn't know they had an outpost there. Mayo is the best place there is and if you can be seen there, your golden.
My heart just cries for the insufferable treatment you are getting there. Please know I sympathise.
Hank
There is a clinic in wimbledon that treats ACNES. GOOGLE ACNES WIMBLEDON
Hi @horthog, I'm indeed sorry that you are not getting the care you seek. You may wish to consider seeking health services from Mayo Clinic in London UK. Located in London, Mayo Clinic Healthcare offers an array of services, including a range of comprehensive health assessments, specialist consultations, concierge medical programmes and second opinion services. We offer expert care to our patients in London and also provide a gateway to a variety of highly skilled specialists and services in the United States. See more here: https://www.mayoclinichealthcare.co.uk/
You may also wish to talk with other members who have ACNES here:
– ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome https://connect.mayoclinic.org/discussion/acnes-abdominal-cutaneous-nerve-entrapment-syndrome/