I had an LP 4 weeks ago and have today been told that my follow up appointment with the Neuro is the 19th October. Only another 8 weeks to wait!!
Must admit, was hoping to have had a confirmed dx before then but am clinging to the hope that as it’s quite a way off, it can’t be too serious??!!
My symptoms have definitely worsened since I saw him at the end of June, which was when he advised that the MRI showed inflammation on the brain & spine caused by MS, namely:-
Tingling and numbness in left hand is now in right hand aswell (these are constant)
Now have tingling in left leg and stabbing pains in left leg (these come and go)
More tired than usual
More trips to the loo than usual
Blurred vision, eye infection and styes. (Had my annual eye test in the week and the optician advised that I have blepharitis). Don’t know if this is due to the possible MS or just coincidence.
Still have Lehmette’s (more or less constant)
Really want to know what’s happening. I’m not the most patient of people at the best of times and the thought of having to go another 8 weeks in limbo is a nightmare!
Sorry to go on - just wanted to get it off my chest!
Hi Sarah, yes this waiting does our heads in, eh? I had an lp last week and expect the results in a letter in a few weeks. My follow up appt is 17th October. I just wish someone would say, Yes, its definitely PPMS`. Been round the houses for 14 yrs and really fed up now.
We can compare notes when we`ve seen our neuros, yeh?
Waiting is a b****! Summer holidays tend to make things worse, but you might be lucky and get a cancellation (phone and tell them that you’d like one, assuming the results are in - no point seeing the neuro before then!) or the neuro might squeeze you into his clinic once the results are in. It can be useful to phone the neuro’s secretary to ask about results too - it can speed things up!
I’ve phoned the Neuro’s secretary and explained that I’d like to be seen ASAP. She is going to contact me next week when she thinks I may be able to get in to see him one evening. Fingers crossed!
I’ve just had a call from the Neuro’s secretary asking me to call into the clinic this evening on the way home from work, when he will see me to discuss the LP results. Hopefully will know one way or the other this evening - will update you tomorrow.
Good luck, I am trying to get hold of my neuro for days now, When I do get hold of her I know she is very good and very thorough but trying to reech her it like chasing a pot go gold at the end of the rainbow.
I saw the neuro last night and he’s confirmed RRMS. Apparently, the LP showed signs of inflammation and some ‘minor’ abnormalities which was enough for him to confirm the diagnosis. I have to go back and see him on the 19th October to review my symptoms and discuss possible treatment.
I feel relieved that it’s finally confirmed but still a bit shocked that this is happening to me. I’m very grateful though that I’m not as bad as some people. Onwards and upwards!
Hello, Sorry for the diagnosis xx As you said, you really wanted to know what was happening to you so at least now you know what has/is causing your symptoms. Bigs hugs, take care of yourself as this all sinks in. Sam x
hello again. So youve got your diagnosis. I cant say congrats as it isnt the kind of news we want. But having said that, at least you know what youre dealing with now.
Your neuro should be able to discuss your treatment options, when you see him in oct. Ill be a tad ahead of you on 17th oct. Just wish theyd give me a frim diagnosis. Somehow I doubt it tho. Ill probably have to go for genetic tresting…more angst!
The name change confused me there, lol. Glad you got an answer at last.
There are no guarantees that you will be eligible, but if you have a look at the msdecisions website before you see the neuro, you may get the chance to speed up the time to getting hold of DMDs. The normal route is the neuro says to go away and consider DMDs and meet with the MS nurse later on to discuss and decide. If you already know, then you can potentially skip the wait between these.
Thought I’d update you on the events of the last week and wondered if anyone had any advice.
I went for my follow up appointment with the Neuro last Friday where we ran through all symptoms (past and current). For the past 4 weeks I’ve had real problems with my left leg, namely numbness which has caused me to fall & trip a few times especially coming down stairs. I mentioned this to him and he prescribed me a course of medrone (100mg a day for 5 days). Whilst I was taking them, I didn’t have any side effects at all, but as soon as the course finished on Tuesday evening, I’ve had a really bad salty taste in my mouth, feel really tired, legs and arms feel really heavy all the time and my head feels “fuzzy”. Does anyone know if this is a typical side effect of medrone and more importantly, when will it end??
He’s agreed that treatment is the next step for me and referred me to an MS Nurse, but in the meantime, I just want to try and get back to feeling a little bit ‘normal’!
I had a 5 day course of Medrone recently, I took 500mg a day though, but I had some of the side effects you describe after I had stopped taking them. I think the side effects lasted about 5 days, definitely was less than a week. I felt really tired all the time, a bit confused and I ached so bad, I felt like I had been run over by a truck. I also had the awful salty taste in my mouth, but what was strange was after the bad taste had disappeared, I had a craving for salted crisps, breadsticks and pretzels, I also put loads of salt on my food, something I never do…I had forgotten all about that!! I also broke out in spots, although my skin looked great, as my eczema cleared up!
I was taking 500mg a day as well and I’ve also broke out in spots! Thanks very much for that - feel much better about everything now. Must admit do feel better today than the last couple of days, so hopefully things are getting back to ‘normal’ now!
