GasconAlex

Although not good to be ill, it would be great if you could get a definitive diagnosis with positive test results to back things up. Hoping you don't have too long to wait and the testing is successful (? not sure on correct adjective here, but you know what I mean)

Well if true I have certain difficulties.... Having had one side of the inner ear vestibular system surgically removed it might be a cause of some of my issues. Currently enduring vestibular therapy but not hopeful of any improvement. If they prove the link it might help convince some of the doctors about the issues because I often fall into the chasm between specialities. (Neurologist says must be ENT issue because vestibular, ENT says neurological because no ear left)

I don't have this problem with lab results because I get a copy of all my lab tests. I then have this on hand to offer to any new specialist. They then consider the past results before deciding whether to redo tests because they are too old or add anything more. What's more is that outside of hospital settings I choose the lab who deal with all the tests even if these have to be sent away, and the blood draw is also done with a nurse home visit. Another example is a recent cranial MRI, since it was a bit of a wait as it needed a high end machine I had a different request from a different neurologist for a similar exam. I contacted the university hospital that was going to undertake the MRI and they were happy to look at the prescription. Because it was a similar exam they agreed to do both at the same time and then send both reports to both doctors even though the new doctor was not in practice at the hospital and at the same cost (although this is picked up by the state anyway in my case) Here we are expected to have copies of everything and everything also gets copied to your PCP/ GP so much less duplication of tests. The only downside is that when they ask you for extra tests / exams / specialist specialist visits you have to organise them but at least this means that the appointment times are possible to get to. The system here is not perfect but I'm glad I don't have to suffer like many of the rest of you.

It depends what you mean by dizzy. Try looking at Dizziness-and-balance.com which is excellent for listing causes for dizziness and might give you help in narrowing down the cause of your dizziness.

A list helps. Even with a person having a list with what you need from the appointment helps. Leave gaps to make notes and if you are really struggling you might be able to give it to the doctor. I also have a truncated medical history available but because it's huge and complex in my case I don't take it out unless asked for something from it. In some countries, I don't know about Australia, you can have either a social worker or a volunteer from a local disability or medical charity who might be able to go with you. You might find someone sympathtic who is willing to help you- if you are lucky. Here I get a fairly generous mileage back from the government for going to appointments further afield so this can be used to compensate friends or volunteers for their time and petrol. Not much help because it's really difficult being ill on your own, I'm lucky my wife helps lots because I started making stupid errors in appointments when I was on my own in the appointment.

Use a pill minder app or just the timer on your phone. It's the only way I remember to take the pills at the correct time, my phone shakes at me at the proper times then every 10 minutes until I tell it I have taken them. Try being in a wheelchair to stop spontaneity. At least 48 hours notice to use the train (they refused once at 47 hours 15 minutes) and having to prepare itineraries to see if the station, buses and roads are accessible (in lots of places the taxis aren't an option either). Even going out for the evening or shopping is tricky.

It depends what they are intended to cover. I've found the term rather flexible depending on what they are trying to do. When I was in long term rehab I did have quite a few sessions / evaluations and ended up with rather odd results. The results were consistent but not following the normal patterns that they were used to. (This was neuro rehab who mostly dealt with strokes and brain trauma. Those of us with more minor brain injury and damage from tumor removal were in a very tiny minority.) The tests themselves ran the full range from basic mental function to things like the Wisconsin card sorting tests and took hours in total. If they want to add a psych assessment as well that was separate in my case and mostly a waste of time as (for me) he didn't look at the case history and came up with utter rubbish (to quote my GP). I've kept the results in my files but never have had to use them as I qualified for disability without any issues. Then again my government is fairly generous on medical and disability benefits.

I would not hold out much hope on neurosurgery helping out. The last one I saw said he could only help on major defects that show up on images. Otherwise he redirected me to neurology who do use tests to justify problems but in my experience are difficult to get to do anything unless you have an obvious and simple problem. Neurology here does a full range of autonomic testing but is most focused on the severe forms so other than noting that your results are not normal they don't then follow up on them. Sorry to be less than helpful and I hope you get something positive from your appointment.

I did have a tb test done due to sharing a hospital room with someone who later turned out to have TB. Absolutely no problems and I managed to avoid getting TB too. No issues with any other vaccination either including meningitis, covid, flu and a few normally only given to children and immunosuppressed people.

Although not a fan of them, especially when it's over 40°C outside, compression stockings are great in that they don't interfere with your body chemically. Personally I would rather keep the stockings (which look like socks if you wear trousers) and not take another pill! I have started getting some skin issues with the anti slip bands but by changing between two marques with different techniques (one a complete band the other with spots) this is just about manageable - it's mostly heat related I think.

Luckily the surgeons all wanted me!

It's always easier if you are one of the crowd because all the options are well documented so even if you have problems with one set of drugs etc. there's always the next layer down. If you have rare (or really atypical) conditions then it becomes complicated and you need to find doctors who are willing to give you the extra mile. Your illness is also well covered within the specialties. For those of us that fall through the gaps it is really complicated. I remember being in hospital with specialists from ENT, neurology and neurosurgery having a bedside argument about whose department I should be under and therefore which floor of the hospital. Luckily for me all my administrative stuff is all based on symptoms because they know that a full definitive diagnosis can take years and even with the same illness the problems it causes can be vastly different.

Excellent to get a referral and I hope they take good care of you. At the very least they should be able to do a full range of testing which should show some of the scope of your issues. Hopefully this referral gets you seen.

Honestly was this a medical doctor? The pepcid will help with GERD symptoms but not a lot else and the alpha lipoic acid is just a food supplement - this means that they have not tested it under proper pharmaceutical conditions and is not regulated as a medicine here. I would be incredibly sceptical on any doctor who said take anything and you'll be healed as honestly this cannot be guaranteed even on simple stuff and dysautonomia is anything but simple. If they are proposing changing any other medications you take I would take advice from the prescribing doctor before making any changes. If you are currently taking any other medications many require gentle phasing out in order to prevent sometimes catastrophic effects. I've known two cases where a doctor has advised quitting all the drugs. The first (a neurologist) recommended cutting out all anti seizure drugs for a severe epileptic - luckily they got a second opinion who informed them that if they had followed the advice it might well have been fatal and reported the neurologist to the board. The second was a GP who stopped lithium and high BP meds for a friend with predictable but luckily non fatal results but the hospital wasn't happy. I'm not a doctor or giving medical advice but take a second medical opinion before following this advice.

Just saw this A Liver Disease Gets a New Name, Diagnostic Criteria Nonalcoholic fatty liver disease will now be called metabolic dysfunction–associated steatotic liver disease, or MASLD So you get to change disease names, which always confuses everyone! Hope your next appointment goes well.