At a loss, multiple consultations still no answer...any idea?

That's a good point, thank you. In all fairness my GP has been pretty good so I'm sure he'll advise me on what I should do next. Normally there's a 1-2 week turnaround if something serious is detected. Therefore, whatever has been shown poses no immediate threat.

@change25 When you see your GP, ask if he can get the MRI released and sent to Mayo. Keep up the good work!

I get test results via a "portal". Does your Dr. have this? If so, test results may be there. If not, I'd go to the Dr's. office and ask for the results.

Spouse diagnosed with small fiber Neuropathy. Is there a more appropriate site here?

Hello @one00100, You should receive another email notification where I welcomed you to a small fiber neuropathy discussion. Here's the discussion if you want to jump to it now - https://connect.mayoclinic.org/comment/636941/

I've not heard of that before, I'm not sure if it's standard practice in the UK. They do have access to some results but when you're referred to a specialist it's is normally separate until they release you back to your GP.

@change25, @becsbuddy and all....
Glad you got through the MRI ok. Fun, eh? A very valuable tool for the medical community. I've learned after testing, a phone call from one of the medical staff or physicians comes soon after the results are known and something unexpected or unusual is found. If the results are normal, I've always gotten a letter within a couple of days and /or nofication via portal. No one does a portal like Mayo, but if an issue is found, you are notified in person. Also, the staff may call to schedule an on-site appt.

I am very persistent now. I believe the pictures, etc from MRI and other tests, are my body and therefore the reports belong to me. I'm a bit pushy now, and live in Florida, The UK has quite different procedures and laws, but I do think it is important for you to follow-up.

You said the hospital said they will send the reports to you GP, right? Suggestion: go to the hospital, to the records department, maybe call first and request copies of your hospital records. You pick them up when ready, in person. I do this every time I'm hospitalized....prior to Mayo Hospital as I only go to Mayo, so they have all my records and only see Mayo docs. But, it is important for you to keep a cc of your medical records at home for when you need them. It's also a good thing for you to read them and understand what's happening in your body.

You are in control of your body and your care! So, take cc of records to your GP or have them delivered to him from hospital....be sure they tell you when the records will be sent. Let them know it's important to get them out asap. Then, contact the GP and see what he can tell you. He may be able to let you at least generalities and then you get the nittty-gritty from the specialist. Also, the GP may be able to get you in to speak with the neurologist sooner if he thinks it will help.

I just know you can do things to get answers. Getting the records is important. Go from there and see what you can find out, but 7 weeks is ridiculous in my opinion. And, that's one reason I no longer see any doctors in town other than Mayo docs. Mayo incudes the patient in the care. No secrets, at least I haven't had that issue yet. And, discussions are up front and honest. I ask 'to the point' questions so the docs can't avoid telling me the facts. I also use the internet carefully, but often to learn as much as possible about the tests, results and such. Fewer questions in this head of mine and that's helpful.

Blessings my UK friend. Do your work, be diligent and determined. You have done such a wonderful job taking control of your situation. AND, be sure to do something important for yourself today and every day. I mean, get some ice cream, or stop at the coffee house for a latte, or get a new shirt or whatever will make you happy. You're special. Be special to yourself. elizabeth

Fantastic advice as always, thank you Elizabeth. I hope you and your son are well.

That's the thing, I did receive a letter shortly after my MRI. However, with the neurology department being so small I thought it was odd that they'd schedule an appointment as when nothing is found they'll release you back to your GP. So I called the hospital and discovered what I did.

It's not unusual to wait such lengthy periods, my friend was recently diagnosed with MS and he waited 8 weeks for his first follow up and another 34 months after his initial MRI until he was officially diagnosed. Unless it is life threatening they aren't quick to act and unfortunately the current situation has only worsened this.

I think it's time to head down to mayo, I'll get the results from the hospital this week and schedule and initial consultation to get the wheels in motion, all the best.

Funny, i get up, do stretches, some qigong, and walk 2 miles, come back and make a protein drink, with cocoa nibs and non dairy milk. I have fruit with nuts, chia and ground flax seeds, and a little muesli for breakfast. Hadn’t heard of taking creatine before, so thanks, I’ll check it out.

SS has the oddest symptoms, I’ve had a sore throat and in the back of my mouth and jaw since May. It’s impossible to get to see an ear, nose, throat specialist. So, my primary has put me on antibiotics, nystatin, and Pantoprazole, but nothing has helped. I’ve had oral thrush, so I’m thinking it’s that.

I’m going to ask the neuromuscular doctor about PT for my sore back muscles. I hope you find a chiropractor helps your neck, jaw, and ears…do you think it’s muscular or a nerve issues? Have you had your parotid glands checked?

Stay positive!

Yes, SS symptoms can be all over the place. I’ve had hypersalivation at times along with dry mouth! Lately I’ve had a crazy super sweating problem with the heat but not always and I used to never hardly perspire but now take electrolytes when outdoors or I become exhausted from dehydration. I had my parotid glands checked about 20 yrs. ago because they would become swollen but that stopped after about a year and I haven’t had them checked since. I have TMJ which I’m not sure if it’s effecting my ears, so many dumb things but I do stay positive because things can always be worse. The creatine I started taking to try and gain back muscle mass and weight which I lost in the past 2 yrs., it is supposedly helpful when combined with exercise.