Sorry you are going through this. It is good to vent about it now just take a deep beath and try to relax and just see what the ms neurologist says.

I can understand your frustrations with dr.'s.

Please keep us informed.

Best wishes and a hug,
Sharon

I feel ya AusSue, it hard for them to diagose somtimes have you got a second opinion yet? I was completeyl mis dxs originally they want to do surgery on my neck cause my legs were numb. Wrong. The reason my legs were numb was because of ms. How bad are your symtoms? I'm not familair with the meds you mentioned. I feel like I have tryed most of the meds without much help but its the love of my family and this site that really help me keep going. My only advise is keep looking for answers dont give up you need to find a balance of med's, diet,support, and love to help you get through this. Be ware of magic cure there are none. If you are mobile still walking around ok I think exercise helps. both my sister and I have MS she has stayed very active and still runs. Not me my nero said if exercise bothered me the dont do it and I have a hard time just getting to the car,store or office. Once you lose it with MS it doent come back so fight!! Do what you can. Learn as much as you can. Share info with others and loved ones.Just dont give up. You could be in for the fight of your life might as well go down swinging. We here are all in this together and you'll find many friends to help you keep going. Best wishes and a big hug from me too. mike

Oh, hunny, I feel your pain! Bad news, it took 12 years for my MS to be dx. Please try to find a MS specialist who will have the latest answers. My prayers are with you!

i don`t know what tests you`ve gone thru, but one of the more precise tests is a lumbar puncture. i went thru 6 years of maybes and misdiagnosis but they finally came up with an a sure dx. and mike is right, once it`s gone it doesn`t come back. fight like hell to keep what you have. dave

Thank you all for your responses. I have had lumber punctures, mris & all sorts of tests that show ms but my lesions/grey spots are not typical ms. Whats new I have never done anything medical the usual way.
I have been trying to keep active as I can but use a walker mostly, a scooter to go out further & go to physio regularly too.
Just to add to everything today I have got red pin prick type rash on neck down to under chest & couple of spots are red which look like start of shingles again (have had them several times), that would explain my hot cold & shivers today.
Didnt get much sleep last night so will be glad to see neuro today.
Will post when I am home again with any results.
Thanks again, Sue

Thankss everyone 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.
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.
Thanks again for letting me rant & vent.

Thanks for the update! Happy to hear you found a doc that you like. I will be curious to find out what treatment option he comes up with?

Stay positive and be well!

I just found that you had some results with doctor. My neuro always orders MRIs with and without contrast, meaning I get a dye injection, but it gives a clearer picture of what's going on with brain and spine lesions, etc. I'm happy you're feeling better (more positive) and venting is always welcome here! Be well!

I know that this is from the 4th but I just read this and the same thing is happening to me. I was dx in 2004 in Texas. I moved to Ohio and went to follow up with a neuro and he said that he didn't think I had ms. I've been to 2 others but they say they are unsure as well. I'm going to the Cleveland Clinic in 2 weeks. I've been on every medication, hospitalized due to symptoms repeatedly and still have symptoms! I know it's frustrating! I've also been tested for lupus and everything else under the sun and no explanation for the symptoms I get. Since I moved I am better but still have burning, vision problems, weakness, etc.....
Hang in there!

Sorry to hear that you are going through similar crap & all the testing for everything else too. I hope the new Dr's can help you too. I am sure we know more about it than a lot of the Dr's LOL.
I am gradually working through everything with the help of the Dr's in at Royal Melb hospital. Still more tests etc as per my journal entry.
Take care & hope you find a decent neuro soon.

Sorry it really doesn't matter how many lesions you have if you have them you have ms, they symptoms alone should tell the dr. that my brain is pretty much covered with lesions. I have been to some really bad dr's.
I know it is frustrating, then you have to pay them. They should be paying us. We don't have any actual ms drs in this area just regular neurologists. I have often wished at some of the dr. appointments I had stuck a small recorder in my purse, and put it close to the dr. Probably illegal without asking permission. Hope everything is better for you. I hate most dr's. I have had so many crazy things happen.