Sounds as though you have every reason to be 'frustrated, annoyed, fed up angry and scared' and I do hope the the appointment is the beginning of some sensible answers.
I think I am one on the 'lucky ones' (ha ha) as I received my diagnosis within four days of seeing the neuro.
I'm sure the last thing you want is going through it all again with another doctor but hopefully this will be the last time.
When you read about many US sufferers they tell the same story of their road to diagnosis, although knowing others are in the same boat is little consolation.
If you still want to see another neuro I recommend the specialist I saw in Albury, Steven Ring.
I know he's a few hours drive from where you are but you can always go via Beechworth and get a 'Bee Sting' at the Beechworth Bakery!!!!!

Thankss for your positive thoughts & prayers. I went into the city to the Royal Melbourne Hospital - this is one of the big city hospitals & has a well known & research. It was well worht the trip - scooter, train & scooter so takes close to 2 hours each way.
Dont think I could handle going to Albury, not practical from Cranbourne LOL
I saw the neurologist who I have seen before. He had been aware the whole time I was in hospital of treatments & how I was so I was glad to hear that. He thinks they have found out whats wrong with my bladder & bowel (had colonoscopy & gastroscopy & have to have endoscopy. The inner walls may have been eroded by long term use of brufen. I was pleased he had some answers on that.
In regards to the ms he said there is not a doubt on it, only a question of what else is going on as well. He wants the endoscopy done soon (which I will get done this month), has ordered a new mri of the head, didnt want the reports from monash as said that he will look for different things. Once all these are done on my next visit in 3 months we will discuss treatment options. He did all the eye light shining etc pin prick, push me pull me, lift arms & legs as well as walk without shoes on, I didnt make far with that till started wobbling & he said to stop. He was very thorough & went through my concerns. he said with the methylpred that I would have reacted as I have had so much. It is still safe for me to have it when really bad but may need to slow down the rate.
I was so glad I went back there so quickly & saw him again. There is no doubt in my mind now that I will continue with the Royal Melb & be treated there from now. I feel a lot better & happy to continue with them.
Just as I thought we were going to have a bit of relax, had a phone call that David's Mum is in hospital with pneumonia & sister thought this may be it. Stressful night last night, have phoned this morning & she is improving a bit. We will go see her later today - about 1 hour drive each way.
Would love things to just quieten down for a while.

Sue, Keep your chin up. You are under alot of stress at the moment and I hope David's mum picks up well.
Sorry to hear the dramas you are having and hope they get it sorted soon. Interesting about the Brufen-I have now stopped taking it prior to my injections as the gastro thought that maybe it was causing me to have bouts of Diarrhoea. I only take panadol osteo now. Must admit I think I am having a few fluey symptoms but I am going to speak to the homeopath I speak to abbout helping me with that one.

Sometimes the meds we take cause even more problems don't they. I appreciate you remarking on that as it just helps me realise I am doing the right thing going off of it,

Let us know how everything goes. Good luck and try and rest when you can.

Sam

Thanks Sam, No matter how much I try to destress our lives it just doesnt happen. We went & saw David's Mum in hospital yesterday & she is very ill. She used to be a big lady, (about size 24) & now her bones are sticking out she is that thin & her skin is so frail it is bruised even from the ecg stickers. She was coughing a lot, had to use the asthma machine while we were there & fell asleep & was very distressed & rambling. Apparently her nights are very rough according to the nurses.
We might go back tomorrow but I am leaving that to David to say as it was very hard for him to see his Mum like that. 2 of his brothers & wives & a sister were all there when we arrived, one brother & wife were just leaving & the sister left soon after. We really dont know if she will improve or not as she said she saw her husband, parents & daughter (all passed away) & they waved her back. We were wondering if she just wanted to see all her family first. There is only 1 son who hasnt gone in (& he does not go to hospitals).
On the way home I rang David's only cousin who is in his 60's & told him how ill Mum is. He was in shock & then crying on the phone. I didnt really know what to say to him so just let him ask questions & talked to him. As David said Mum is Graham's last Aunt & other than Davids family & his own son his only relatives on Wilson side. They will go & see Mum today or Monday.
it is hard as we are both close to David's Mum & not to mine at all (havent heard from her since Mothers Day in May).
I think I must have been too stressed with everything from this week & seeing his Mum as I was vomiting last night which is unusual for me.
Sorry for the ramble & thanks for reading.
Hugs, Sue

Heavens, you are having a hard time at the moment. How frustrating to go back to the maybe stage. I am so new to this, I have no answer other than to say I am thinking of you and send good thoughts your way.

Sarah.

Thanks Sarah. A lot has even changed since last post. I have updated some in journal I think.
basically my following visit to neuro at royal melb (in city) was the worst ever, he didnt have my file, didnt know what was going on & referred me back to monash for rehab & foloow up testing. I couldnt believe it, he ignored new issues I was having too.
Went back to Monash & saw old neuro who is not ms specialist but deals in all. he was very good & reacted to the new things I told him about. Did an eeg as have been blacking out so had to rule out epilepsy, didnt show enough to be that. Did say I have had more optic neuritis as well which explains vision issues. He said there is no question that I have ms.
In amongst all this I have been having a lot of trouble & pain in abdo so now got diverticular disease as well. have had so many tests for that it is crazy. Still got more gastroenterologist appts. Ended up in hospital for a few days as vomiting bowel.
Also got incontinence of bowel & bladder so supposed to get that investigated too.
Have had hearing tests & now got hearing aids as well as new glasses.
had a neuropsychologist review & that defined a lot of the areas I am struggling in.
Had a car accident (reversed into a building) so down to 1 car till we get back hopefully Friday. Have been using the scooter more so takes me 1 hour to get to physio etc. Also had flat tyre on 3 wheel so using 4 wheel scooter. Still have to get that fixed.
Also had to get arms checked today as got sores on them from sunburn 3 weeks ago but they are ok except that I have got an infection & that is why my good arm is so sore & shaky too. On antibiotiotics again for that too.
In amongst all this hubby has had sleep test for poss sleep apnea, see sleep dr in 2 weeks, also has ingrown toenail so has to have that lanced & a week off work.

David's mum is back at the residential care though still keeps getting sick a lot. We were able to celebrate her 91st bd which we didnt think we would. We had a family lunch which was nice.
have spoken to my Mum on phone but she was only interested in talking about her spurs in her feet (boo hoo). didnt even care that I had been in hospital or had a car accident so havent rung her since.

Sorry for long update & thanks for reading

My heart goes out to you. Your problems make me ashamed that I ever complain about anything. You must have an excellent coping mechanism and your husband, who it seems has his own problems, must be a great support. (where would we be without our wonderful spouses?)

Thanks for your response. Never feel ashamed of complaining as you can have one & it can be very challenging.
As for coping mechanisms you either wallow in it & cry or you laugh & get on with life just trying to adapt to what is going on. Not that I can always laugh about it, I do get down & overwhelmed too, thats why I am glad I have found this site where I can vent & know I will be understood.
Just to add to the bundle, I went to gp today & David described the noise (funny breathing & then snort) & she said it sounds like I could have sleep apnea. We just laughed & said havent got room in out bedroom for 2 machines LOL. she has referred me to the sleep centre so will phone & wait for appt there too just to add to the others.
So far I see: neuro, rheumatologist, gastroenterologist, continence nurse, physio, speech therapist, dietician, hearing aid person (dont have to see them for 12 months now), neuro pschologist, now adding urologist or gynaecologist, sleep specialist - no wonder my day off are full LOL. Also gp wanted to send me to dermatologist for my excema & I said not to bother as they can do much for me. No wonder I get confused about who I am seeing when.
You are do right in saying where would we be without our wonderful spouse, I wouldnt be able to cope thats for sure.