First time posting on the forum and I’m just after some general advice from people who will have been through the same process as what I am at the moment…
I have been poorly for about 5 months now and really am suffering, im not going to bore you guys with the smaller details but lets just say it really has been a testing time…
After countless doctors appointments and a 2 week stint in hospital over christmas I am in the process of waiting to see an MS specialist. I havent had a diagnosis of MS nor have they said that that maybe what is going on, just the words “I am refferring you to an MS specialist asap”, so i’m just trying to remain positive and hope that when I see this person they maybe able to shed some light on what is happening to my body, whether its MS or something different.
However, what is really frustrating is the time scale in which I will see this specialist. My last appointment with my consultant was at the beginning of February and as of yet I havent been given a date for this asap appointment. I expect there will be a wait for the appointment as I understand that each time I’m reffered I go onto a waiting list, but should I be waiting this long to get the appointment through in the first instance? I have phoned my consultants secretary and whats even more worrying is she is none the wiser…
Has anyone else had a similiar experience? and is this just typical NHS protocol?
Any help or advice would be so greatly appreciated
Unfortunately some of these appointments do seem to take forever. Would be worth having a word with your GP and see if he/she can find out what’s going on.
Have you had an MRI (scan of brain) yet?
I hope you get the appointment soon… it is SO frustrating waiting for these things and of course frightening when you don’t know what you have.
As you will see from this forum, IF it is MS it certainly isn’t the end of the world. It changes your life yes, but it doesn’t end it. And the sooner you get the dx the better. You can start to learn about what you have and ways to deal with it and drugs that will help.
Good luck… phone the GP and see if you can push them a bit.
Yes have had 2 MRI’s done, alongside countless blood tests and a horrible lumbar punch… I hadnt thought of going back to my GP, but its worth a go isnt it… I hope I get an appointment soon, although I understand I’m probably one of many in this situation
I will let you know how I get on with the GP… Fingers crossed
And yes you are right, there are lots of positive people on here and its good to read about how well other people are coping with something that is life changing, it makes everything seem a little less scary! x
It sounds so silly but I should have asked, BUT when I get in front of medical professionals I turn mute and just cant get my words out!! I find the whole process quite intimidating… But I think its a confidence thing when I get into those situations. He said the blood tests results were negative and so in his eyes it was nothing obvious so thats why he wanted to refer me! The funny thing is I went in with my mum and we both came out and said exactly the same things, we should have asked this, we should have asked that, but neither of us did!! Our own faults really but you live and learn from these things I guess
I would definitely speak to your GP - he/she should be able to shed some light on the MRI/LP results and if need be chase up the MS specialist referral. It’s easy to clam up and forget everything when you’re in their with the neurologist so just be upfront with the GP and say you weren’t sure what to think amd forgot to ask what the results were.
Time to see an MS specialist will vary depending on the area you live in. I’m in London and have managed to see an MS specialist in about a 1-2months but I know some people have waited significantly longer.
Good luck with thye GP. Hope he’s able to shed some light on things.
Hi not been on for a while, we’ll 12 months on and we have eventually seen the neurologist yesterday, now 12 years ago my hubby was diagnosed with fibromyalgia and has gotten worse last 4/5 years we saw neuro had a MRI of his brain and white patches (3) showed up unfortunately we weren’t told where they were. The neurologist told us it was small vein disease, wrote to confirm it and also stated hubby had not got motor neurone disease that was 2 years ago after pushing our doctors and having all the blood test possible asking for a second opinion we went yesterday 5/3/13 must say he was very nice mr Gilmore at Nottingham well he got my hubby to play nose/finger, standing with eyes closed (he couldn’t stand still) then he had him walk tandem gait, I felt so sorry for my hubby the more he tried the harder he failed,just couldn’t do it, then tested hubby’s reflexes and used a tuning fork, through all this he never past a comment asked lots of questions, he said he didn’t want to put hubby through a lumbar puncture because of the amount of pain he is in, I heard him talking about fibromyalgia and then he said something like I don’t think it is, but I can’t remember if he said ms at the end or if he meant the fibro he said he would be surprised (about what he never said) then he said he was going to write to our docs and get them to prescribe gabapentin, and would also get the MRI from the 1st neurologist. Make his decision then write to us, I suppose I expected a miracle, but it never happened, I feel so sorry for my hubby, especially because he has now lost the use of his bowels/bladder, I don’t believe this is purely down to fibro, I really do think my hubby has either ms or a condition similar. I hope against hope that we soon get some answers, I could sit and cry to see him as he is, but I don’t think I would stop, and it won’t help hubby me getting upset because I have had crowns disease for 40 years. Sorry to moan, will keep you informed, has anyone heard of this gabapentin as treatment.
@redtabby - it’s best to start your own thread so everyone sees your post. Gabapentin is used for neuropathic pain. It can be very effective for some people. Build the dose slowly to minimise side effects. I hope it helps. Karen x
It sounds so silly but I should have asked, BUT when I get in front of medical professionals I turn mute and just cant get my words out!! I find the whole process quite intimidating… But I think its a confidence thing when I get into those situations. He said the blood tests results were negative and so in his eyes it was nothing obvious so thats why he wanted to refer me! The funny thing is I went in with my mum and we both came out and said exactly the same things, we should have asked this, we should have asked that, but neither of us did!! Our own faults really but you live and learn from these things I guess [/quote]
Don’t worry hon… we all come out thinking we should have asked this and that.
Hope you get to see MS specialist soon and will hopefully get some clearer info. In meantime, keep a symptom diary… nothing long or grand… but just list main symptoms every day. Might help the MS specialist.
