Waiting to see the neurologist...

[zoefromsussex]

Hi all, I just wondered whether any of you are still in limbo and waiting to find out if you have got MS? I had an MRI & LP on October 20th, following a right-sided attack of ON and have been waiting to see the neurologist ever since! I've finally got an appointment for Dec 20th so only a few days to go but I'm feeling quite mixed emotions as it gets nearer. I already know that the MRI showed several lesions and that the LP was positive and since the ON first started I've had three very strange episodes (can't really explain the feeling but similar to vertigo) After the LP I was poorly for a week and had an awful buzzing sensation and noise distortion in my left ear which really freaked me out and weak, shaky legs which was upsetting. I've never regained full vision either and my sight is permanantly blurry with washed out colour's. I also regularly feel as if I'm coming down with something (achey/temp/shivers etc)
Does this sound like MS? How do the doctor's decide whether its RRMS or PPMS? Oh, one last question; if they do suspect MS will I have to take the dmd's straightaway? I'm really reluctant as I'm still bf my son and also, my dad died of liver failure last year after taking similar drugs. I hope to hear from some of you soon...oh and hope you all have a lovely xmas!

[zoefromsussex]

Thanks Lulu, that's exactly what I'm trying to do; finding out as much as I can as it does seem less scary once you know what you're dealing with. I was so ignorant about MS before it was first suggested; I thought it meant I'd be wheelchair-bound at the very least.
How long have you had MS?

[Lulu54]

Hi Zoe and welcome to the forum here.  Jensequitir gave you some good information - the best thing you can do right now is learn what you can about MS so it is less frightening and you will be able to have a good discussion with this MS doctor when you see him on the 20th.

We have great health pages that review many of the common MS topics and they are written in easy to understand terms.  You can find them at

http://www.medhelp.org/health_pages/list?cid=36

Do stay in touch and feel free to ask all the questions you have - we're here to try to help.

Lulu

[zoefromsussex]

Thanks very much for your replies. I think I'm kind of in denial if I'm honest! I know that none of this is normal and that logic suggests MS but, like you say, it's scary. I was wondering if I have PPMS because the symptoms are lingering for so long but I feel better for knowing it can just take ages to recover (I thought I'd recover really quickly) I guess it would make sense that people have often had it longer than they realise because with hindsight, I can think of quite a few strange happenings. I often get numb lips and a cicular patch of numbness on my right cheek. A cotton-covered vibrator is a fab description of the ear symptoms!
I'm breastfeeding my 9 month-old (I've got a 5 year old too) so I'd like to avoid starting dmd's for as long as I can and I think copaxone sounds the best choice for me because the injections are daily (less likely to forget!) and I've read there are no flu symptoms. Plus, it doesn't sound as likely to ruin my liver.
So, did you both find it difficult to get a diagnosis? From the stories I've read, it seems I've been lucky because I was sent to a neurologist as soon as my eyesight failed and the guy I'm seeing on tues is an MS specialist.

[kwarendorf]

Secondary Progressive MS tends to follow RRMS. As Jensequiter said, many don't realize how long they have had MS. In my case it was 20 years. By the time I got dx'd this fall I had moved from RRMS to SPMS.

I'm not exactly sure what that means :-) I think it means that absent drug therapy (Tysabri for me) I would continue to have flare ups and that my remissions would not be as complete.

[jensequitur]

Well, with the lesions on the MRI and the positive LP, I'd say you're heading towards an MS diagnosis.  I know this can seem very scary at first.  

The neurologist can explain your questions about your symptoms better than I can.  I had some similar problems - the buzzing in the ear (felt like somebody had stuck a cotton-covered vibrator in there!) the vertigo, the ON, and the weak, shaky legs.  Loud noises were a real problem, I had nystagmus, serious problems with speech and writing...  I have lesions in my cerebellum, my brainstem, my frontal and temporal lobe, and my spinal cord.  

The good news is that you can recover from all this, but it will take a while.  I had a bad attack in 2007, and it took me about five years to recover.  

RRMS and PPMS present in different ways.  PPMS is a gradual decline without perceptible relapses.  RRMS has periods of remission and relapse.  What people find after they've been diagnosed is that they've actually had MS for a long time, but the symptoms weren't bad enough to seek treatment.  (At least that's what happened to me!)

So a doctor will probably diagnose you with RRMS off the bat.  If your symptoms present in a different way than RRMS, he may change his diagnosis.  I thought I was PPMS until I started to recover - it just took so long!

You say you're still bf your son?  Does that mean you're pregnant, or nursing?  They prefer to wait until you're not nursing or pregnant before they start the DMDs.  They also are very careful about keeping track of your blood and liver levels when you're on a DMD.  (At least they should be.)  Copaxone doesn't require blood testing, but Betaseron does.

The DMDs will help your disease stabilize, and you'll have fewer relapses overall, but hurrying up to take them isn't necessary.

Hope this helps!