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

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

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.

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

I’m so sorry to hear that most of your symptoms have worsened but glad your pain is less. I can only add, for what it’s worth, that I drink a smoothie each morning containing whey, creatine, 2-3 fruits, peanut butter, cocoa, protein drink, ground flaxseed and almond milk. I also take Vit. C, D, magnesium glycinate every day and B complex 1-2 x month. I walk plus use exercise equipment plus some lite yoga/stretching at home. I’d been seeing a P/T for my neck which has been bad lately and will probably see a chiropractor, also my ears/jaw have been sore/tight lately. I think it’s SS. also mindfulness, and prayer help me. I don’t see my rheumatologist again until Dec. but I’m going to look for another one beforehand. I do hope you get some answers and feel better soon.

I agree…My neurologist warned me I might not even be seen by a rheumatologist! Sure enough, I get stuck with a PA who was completely unhelpful after two visits, so I canceled the third visit, asked to see a MD, and was refused. Very sad as I look at Mayo and John Hopkins and they have a webpage on Sjogren’s and do a team approach for treatment.

So, I found the Rheumatology Dept. Director at the only other big hospital in the region. I wrote her and her assistant got back to me the next day. Said to get a referral and they’d definitely see me. So, I I’ve got a request into my neurologist.

He also had referred me months ago to a neuromuscular doctor, who I finally get to see in two weeks, so I’m a little more hopeful!

I did start taking R-ALA/S-ALA, ALCAR, and complete Omegas, with GLA, and B vitamins. And, I take 300 mg Gabapentin at night to help me sleep.I also don’t do refined sugar, white flour, etc. and I walk a lot. My numbness has continued to worsen, as have my feet, hands, and muscles. But I don’t have the sharp nerve pains as much.

I’m glad your managing your symptoms somewhat. Perhaps I’ll have better results as I keep my self-treatment up longer. Anything else natural you’d recommend?

@athenalee. Hi Athena. So very glad you stuck to your guns and were such a good advocate for yourself! Seeing a neurologist and a neuromuscular doctor would be so important for your conditions. Way to go!
I've been self-advocating too, on behalf of my IBS and daily longterm diarrhea. I've been imploring my doctor for months to stop a certain daily rapid motility prescription medication (Constella) which I took together with Lax-a-Day and Metamucil every morning. I was SURE it was the cause of the daily, very weakening diarrhea. She finally agreed to stop the RX, and lo and behold, no diarrhea ever since! However, she did start me on Dicetel after a three-day wait. I took the first pill as directed, with a full glass of water and with food. Within 3 hours I was throwing up violently many times. with a scarey show of blood at about the 4th time. My Care Aid stayed with me for a while but once she had to leave for her other duties, even more violent upchucking ensued. She summoned the nurse, who said if it continued, I needed to go by ambulance to the hospital E.R. It started again with a vengeance and an ambulance took me to the hospital, completely dehydrated and still extremely nauseated. Lab work, x-rays I.V. fluids as well as anti-nausea I.V.s x 2.
Finally sent home by ambulance at 2:30 a.m.!
And folks, I'm not saying either of these meds would be bad for YOU. I'm just extremely sensitive to prescription meds and this is solely my own reaction. Feeling better now, but still weak and wimpy. Determined to get my stamina back and be outdoors walking my mile some day soon! Laurie

Oh, Laurie, @artist01. This is just awful! I’m so glad your health aide was there to help you! When will medicines ever learn to just be nice to us and just do their job! Stay in bed today, please

@athenalee. Hi Athena. So very glad you stuck to your guns and were such a good advocate for yourself! Seeing a neurologist and a neuromuscular doctor would be so important for your conditions. Way to go!
I've been self-advocating too, on behalf of my IBS and daily longterm diarrhea. I've been imploring my doctor for months to stop a certain daily rapid motility prescription medication (Constella) which I took together with Lax-a-Day and Metamucil every morning. I was SURE it was the cause of the daily, very weakening diarrhea. She finally agreed to stop the RX, and lo and behold, no diarrhea ever since! However, she did start me on Dicetel after a three-day wait. I took the first pill as directed, with a full glass of water and with food. Within 3 hours I was throwing up violently many times. with a scarey show of blood at about the 4th time. My Care Aid stayed with me for a while but once she had to leave for her other duties, even more violent upchucking ensued. She summoned the nurse, who said if it continued, I needed to go by ambulance to the hospital E.R. It started again with a vengeance and an ambulance took me to the hospital, completely dehydrated and still extremely nauseated. Lab work, x-rays I.V. fluids as well as anti-nausea I.V.s x 2.
Finally sent home by ambulance at 2:30 a.m.!
And folks, I'm not saying either of these meds would be bad for YOU. I'm just extremely sensitive to prescription meds and this is solely my own reaction. Feeling better now, but still weak and wimpy. Determined to get my stamina back and be outdoors walking my mile some day soon! Laurie