Gaz Me again. I just looked at your first post again. This is getting bloody ridiculous. You started out this thread on 14th January with the title ‘think I’ve just been diagnosed’. And we all agreed and said ‘oh yes, you’ll get some DMDs now. It’s taken a while since your first symptoms in 2003 but at least now you’re in the system!’ In your shoes I’d be writing a letter of complaint. But that’s me, complaint letters are my forte. But what I would definitely advise you to do is contact the PALS department of your hospital. It stands for Patient Advice and Liaison Service. You can find the contact details on the hospitals website. I think you’ve had a bloody awful year with the useless neurologists. Not that I’d put it quite that way to PALS, you generally get more help if you are nice and polite and ask for assistance rather than go in all guns blazing. Even though that’s what I reckon they deserve. Before you contact them, write down all the symptoms you’ve had, all the tests (with the results) and the rough dates. That way you can explain exactly what’s happened and when. I truly think you’ve been abysmally treated Gaz. And it’s time you started getting some proper answers and hopefully a diagnosis. And some bloody drugs to stop future relapses. Sue
Sue when I get to see ms Nero at Salford given all my history symptoms and positive results I’m sure he will diagnose me and wonder what the hell my Nero has been playing at. If this is the case I will without doubt be making a complaint
Called Nero secretary yesterday to find out why I had not been referred she rang back today and said because she had been of il for a week it had been misted so she will do it straight away so that mess up as put me 3 weeks behind and means il be on steroids 3weeks longer. I’m sure these things only happen to me. 3 weeks waiting for postman for my appointment that was never going to arrive. If I hadn’t phoned secretary would I of ever got an appointment the hole system is a disgrace and needs looking at. How can they type a letter to my doctor saying I’ve been revered and not send a letter to the place I’ve been revered to.
Its not great is it?
My wife was pretty much diagnosed in july but due to MRI being done in another area the neuro couldn’t view scan but seemed confident from the report of scan,examination,history etc.
Then early september we went back for follow up and both thought the possibility of dmd’s would be discussed in more detail etc, only to find out the neuro had left and a more junior colleague was there instead, scans still not viewed but would be looked at at their meeting a few days later!
Then we had a copy of letter to gp saying they had viewed and agreed with original neuro that it was likely Ms and that the Ms specialist had agreed for her to be seen by him and she had been referred on.
We have waited patiently(whilst being very frustrated by it) but at the weekend i realised it was exactly 2 months and convinced her to call hospital to see when it was likely to be sent? (incase young dr had failed to do the paperwork).They were very apologetic but i was right and whilst the main man had agreed verbally to see my wife the Young Lady Dr had written to my wife’s gp but failed to do the internal paperwork or whatever needed!! Sounds similar to your latest news Gaz!
Yes it’s not the first time I’ve been forgotten about I think the hole system need an overhaul. The earlyer diagnosed the better it says for MS
The time has come I’m seeing an MS specialist at Salford royal in the morning don’t no what to expect but hopefully will come away with some answers.
Ooh Gaz, I’ll be waiting to hear. When I saw your name I thought maybe you’d already got an answer!!
Best of luck for tomorrow.
Sue
Hope your appointment is constructive. Will be thinking of you tomorrow
You are going throught it Gaz , i know the docs and hospital bods dont seem to care and keep us waiting for ages and the big gaps between appointments , ive been off work for the last 6 months waiting and chasing appointments i tell you it isnt good ,
i said to them just give me some thing so i can get back on with my life please !!! my head is dizzy and i cant walk far without running out of energy with a limping leg , the fog in my head drifts in and out every day , my legs are weak and yeah the tripping up is worring .
hope you get some answers soon gaz .
Just got back still no diagnosis because brain lesions not tipical for ms however he has put me on mycophenolate mofetil and to see him in 3 mouths and yet more blood test so still none the wiser
Oh. That’s not exactly what I was expecting you to say.
I’ve just looked up Mycophenolate Mofetil. It’s an immunosuppressant. So while your lesions maybe aren’t typical for MS, there is clearly some kind of immune system problem. Most often it’s used to prevent organ transplants from being rejected. But there are other uses too, sometimes with rheumatic conditions or inflammation of blood vessels.
It seems that the most common side effect is likely to be related to the stomach, ie nausea and stomach pain. It can leave you more open to infections as your immune reactions are lowered.
If I were you, I’d make an appointment with your GP before starting the drug, ask if there’s anything they’d normally prescribe to help with potential stomach issues, eg Omeprazole. Also, should you have had the flu jab before taking an immunosuppressant? And if so, is it too late to have one now? (How long before you start the drug?)
You might even ask whether it’s as well (given that you’ve waited this long!) to have a flu jab now, then start the new drug after Xmas. Since side effects are likely to be an upset stomach, Christmas isn’t exactly a good time. The info I just saw also advises you to avoid alcohol.
If you want to Gaz, keep letting us know what happens next. You may not have MS, but your journey has taken so long and been one that’s been played out on here, I for one would like to know how you’re doing. So either post on here, or send me a PM.
Best of luck.
Sue