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

@change25, @becsbuddy and others...

My son is better. Thank you for asking. He was quite ill, his heart wouldn't settle down and he was having tough reaction to med withdrawal. He was throwing up for several days, out of control. With throwing up so often, he wasn't able to keep his med levels steady, so blood pressure, pain, all the meds weren't in his system doing their jobs.

He's 52 years old, disabled since he was 35 w/dystonia, a movement disorder, rare and difficult to diagnose and treat. He's in severe shoulder/arm/head nerve pain, lost the use of his left arm, has dilaudud pump and gets regular botox shots from specialist at Mayo. Now, he gets regular massage therapy at Mayo. Hope to get additional help to stabilize his life, to give more independence especially since I have these new difficult dx. I must back out of taking care of his meds, setting up pills, ordering groceries, driving, overseeing his scheduling, etc.

So, you see? You are quite blessed to have your life and independence.And, you are well on your way to getting help and answers. Keep up your good, hard work for yourself.

Bless you and keep up the good work!
Elizabeth

You're right, perspective is so important and your often blinded in the moment until you realise that there are things to be grateful for. Even though you're suffering the ordeals others are facing are far greater.

I'm glad you have one another, you are both very strong and brave. I hope you both continue to see improvements in your health and you never know with how science is progressing a cure may not be far away.

Your response is so thoughtful and caring! Your turn will come and you will get better. We’re all rooting for you!

@change25 How have you been doing? Any set date for an MRI? Thinking of you and hoping for the best!

Hey Becky, you're so thoughtful thanks for thinking of me. The past few days haven't been great but I'm trying to keep my spirits up. I do have some good news in that my MRI is scheduled to take place in 12 days. In an earlier post I grumbled at the NHS but I must retract that as they've been brilliant. With the backlog you're expected to wait 12-16 weeks for an MRI and mine will have been 6 weeks...very lucky indeed.

Have you considered Chronic Faitigue Syndrome now called ME/CFS. The English discovered on various scans that the brain lining was involved. This, however, doesn't mean a cure exists. Since researchers seem to searching in their own particular directions. Also, have you been tested for Herpes Simplex One and Ebstein Barr Syndrome (mono?) Apparently, most of us walk around with titers to this. There are drugs that treat the Herpes group. They must be taken by mouth not rubbed on your mouth. Apparently, they don't always work. And, as has been said, a good rheumatologist is essential as an essential starting point. You might add a good neurologist,too. I must say I'm telling you all this and none of it has helped me. However, it's worth a try. Good luck. BiskitsMomma

Thanks for getting in touch. Yeah, the rheumatologist I saw thought it may indeed be CFS but no official diagnosis was given an I haven't been referred to my local department so I'm still waiting on that. Circumstances have been tricky due to covid so testing has stagnated, however I have recently had a FIT stool test which revealed some abnormalities and I've been offered a emg/ncs test which is taking place tomorrow. This will then be followed by an MRI which will hopefully identify what's wrong. I've not heard about either of those, would a routine blood test reveal if you have it?

@change25, I’ve been wondering how your medical appointments and tests are progressing. While it would be good for you to get answers, I sure hope it’s not CFS.

There was some discussion on CFS on Connect recently and @johnbishop posted this incredibly moving and informative Ted Talk about it. As I didn’t know much about the disease, I watched it. I recommend it if you’ve not seen it - https://www.ted.com/talks/jennifer_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose/up-next

Best wishes on your finding a diagnosis soon!

Hey @athenalee, I hope your are doing well. Thanks for the link, very scary illness indeed. At one point it wasn't recognised but in some cases biological markers can be used for a possible diagnosis. I have faith that the MRI will reveal something. I did ask my parents to monitor changes in my skull as indentations have formed that weren't previously there and I do believe that's the key to a diagnosis. Where they agree that they've definitely worsened over time.

Just a quick update from my NCS/EMG test. It was at a new hospital which had a very confusing layout - luckily I managed to make the appointment with minutes to spare and was immediately called through. The neurologist and technician were brilliant, but I wish I'd have mentally prepared for the pain as at times it was fairly uncomfortable. The good news is the neurologist believes he knows what the cause is but needs the MRI results to confirm this. So it's just the MRI to go and hopefully I'll have the information I need.