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

It's a daunting prospect. Unfortunately, if you don't fight for yourself no one will. Especially with autoimmune diseases, from the little experience I have, they are extremely difficult to identify and diagnose. I think you learn that if you don't ask you won't get. So the more prepared you are the better your chances. I'm lucky in that I stumbled across this space, it gave me the knowledge and confidence I needed to push for answers.

Fortunately, there is a wealth of medical resources on the internet. So, I know I can’t diagnose my ongoing, as yet undiagnosed symptoms, I nonetheless have some leads based on what my neurologist thinks and my labs. So like yourself and others in this discussion I’ll keep up my research while I continue in my queue to see the specialists! At least I’ll have the knowledge to question what they say if I’m not sure I agree with their recommendations.

@change25 Have you contacted anyone yet about some genetic workup? Especially Ambrygen or Apollo or Sequencing?

Indeed, it gives you some scope but at the same time it is also overwhelming. That's where it is extremely helpful that you can discuss what you are going through before you stumble down the wrong path. Please update me when you hear anything, all the best.

Yes Karl, I have. I'm still yet to hear anything from them though.

@change25 OK. I understand you have sent in a sample for them to be working on. It does take some time, although that time frame is getting much shorter. Down to less than a month from sending the sample, or less than the traditional three months for the 100% genome analysis. Some are faster than others.

@athenalee You are so right; there is a wealth of information on the internet. But there is also just as much misinformation. Most people have a really difficult time deciding what’s trustworthy and what’s a scam. As an oncology nurse, I frequently met people who were trying something “they found on the internet.” Sometimes they were trying a supplement that actually had chemotherapy drugs in them. But not ones the doctor wanted them to use.
Check out this discussion in the Just Want toTalk Group:
https://connect.mayoclinic.org/discussion/how-do-you-identify-trustworthy-health-information/

@change25 As the days go by I can really see your neuroscientist/economist persona coming thru! Keep on keeping on. But be sure to let us know how you’re doing. Becky

Definitely! Since being on Tacrolimus, with its more than 700 known drug, food, supplement interactions, I research everything, rely just on the medical expertise, check Drugs.com, and if in doubt ask my transplant doctor. I learned the hard way when I took just two homeopathic pills for a sinus headache. I went in the following week for labs and my liver enzymes had risen substantially. My nurse asked me what I had taken, so I had a true confession moment!

Not much has occurred since my last update. The X-rays from my dentist were inconclusive. All that was identified was some enamel erosion with tender muscles. However, I must say that by increasing my intake in vitamins D and B12 I've noticed a fairly significant improvement in my general wellbeing. I'd say that my symptoms have halved in the last week. Where all that is ongoing atm is: tingling in feet, fatigue and pain in cheek/ear region. So this in itself is a massive improvement. Other good news is that I've now been referred over to my local hospital. They haven't briefed me on what's going to happen just that'll they'll be in touch soon. Finally progress is happening... anyway I hope everyone is doing well and receiving the help they need.