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

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.

@change25 Good report! Let’s hope everything keeps improving. Do you feel positive now that things have been turned over to the local hospitals? Keep us in the loop! Becky

Thank you! Yeah, I'm relieved. The team I'll be under are much more specialised at looking into rare conditions. It's just the fear of the unknown, especially when considering the results of my last bloods where I was adamant they'd reveal something. I can't complain though, there's people who've waited far too long for answers so I'm extremely lucky in that regard.

I’m very glad you’re getting somewhere. I finally have a Rheumatology appointment…with a PA. But at least it’s a start. It’s at Dartmouth Hitchcock, which for my region is a much better place to get treatment. No word yet from the hematologist. I find waiting and the lack of communication very frustrating.

Keep being strong and diligent!

That's fantastic news, I'm sure you'll have some answers soon. That does seem to be the case unfortunately. I had a similar issue when it came to my dentist. The supposed X-ray request hadn't been passed over nor did the hospital that I'm now under have any of my recent medical history. Miscommunication is never a good thing and it's especially concerning when it's dealing with your health. Mistakes happen, they are only human after all. It does make you wonder though...