Limbo

New diagnosis and before diagnosis
1

Hey all,

Just an update and some questions as i had my appt with my neuro consultant last night.

I saw him and forgot most of the things i wanted to ask him! I even took some notes and forgot i had them in my bag hahaha!

Anyway, he suspects i have had at least 2 events…as he calls them…and is sending me for repeat head and spine MRI’s. No idea how long the appt for those will be but not too long i hope.

He said " we will get repeat MRI’s done and depending on the results we will start treatment". So i am guessing he thinks that i prob have MS as we have waited over a year to see how i will progress. I have not really improved apart from a little releif from gabapentin, which has calmed the buzzing and pain a little, i actually have more symptoms.

He did say that this was a possible path i could take, but it still came as a shock i guess that he now sspects MS as i was still hoping for that day that i would wake up and everything miraculously everything would be gone! wishful thinking i guess!!

Why do i always forget to ask things…its so frustrating. I wanted to know if i should go back to GP and ask him the things i forgot…it mostly about dibbling wee after i have been (totally embarrassed about this) and as i dont have clear relapses only things that never really go away and then another thing happens to add to it…is this normal? Does it sometimes happen this way?

Will i ever get rid of this tremor? (although mild not horrendous or anything) and my pain is better but not gone and i still limp…is there anything else i can ask for to improve my walking?

Sorry for the barrage of questions but i always leave appt feeling there are lots i need to ask but never do.

Any help appreciated!

Lea xx

2

oh and one more thing…neuro says he doesn’t believe in doing LP as he says it doesn’t help anyway.

Should i ask for one anyway or go with his opinion and just see what MRI says. Is is true that LP doesn’t confirm MS anyway?

xx

3

Hi Lea, I too am waiting for another MRI as have had no dx yet. I did have a lumbar puncture which was negative. I only have one lesion too on cervical cord and until something else shows up I am in limbo. I did have an attack nearly 5 years ago. I have increasing spasticity in right leg which causes a limp. It has been mildly helped with baclofen. I have had neuro physio too as I am doing funny things with my gait. They usually only give someone a LP if their MRI is inconclusive for MS. Although the prof on the Barts MS blog thinks that everyone should have one. You should read what he has to say on “negative OCB bands”. It made me feel more postive on having a negative LP result.

Moyna x

4

Well, it certainly sounds like progress :slight_smile:

I religiously take a list to my neuro appointments and I still manage to forget at least one thing on the majority of occasions! Rather ironically, the thing I forgot two appointments ago was cognitive issues. I was very proud of myself for remembering it at the most recent appointment, only for the neuro to forget about it in his follow up! :slight_smile: It’s sorted now, but it just goes to show that we all do it, even neuros :slight_smile:

The fact that the neuro mentioned treatment makes me think that he suspects you have relapsing remitting MS. Although it’s called relapsing remitting, some people don’t get much of a remission and find that new symptoms stay put. So it may be that this is the kind that you have (obviously I can’t know for sure though, even if I was qualified to guess!).

For your bladder issues, you might find it helpful to talk to a continence nurse. Your GP can refer you or you can self refer to your local service. I don’t know if it will help or not, but very often dribbling is because your sensation isn’t perfect down there and you think you’ve finished, but you haven’t. If this is the case, try to listen and look more to check, rather than rely on your body. I also find changing my body position can help to remind my bladder to empty properly before I stand up.

Tremor is tricky. I think some people find betablockers helpful, but there’s no really good med that I know of :frowning:

Walking is most likely to be helped by neurophysio. Your GP can refer you.

If your gabapentin isn’t fixing your pain then you may need a higher dose, a different med or an extra med. Your GP should be able to help with this, but you may find that you need to ask your neuro first (via his secretary).

As far as an LP goes, it’s possible to have a positive result and not have MS and to have a negative result and have MS. In other words, it’s not a definitive test of MS. A positive result would support a diagnosis of MS, but a negative result cannot rule it out. If you would feel more comfortable with the diagnosis with a supporting LP, then you could ask for one, but if you trust your neuro, then it’s probably not worth it (in my opinion anyway).

Hth!

Karen x

5

Thanks so much everyone, i will do as you all suggest and make some calls!

Again i back to wait and see but i feel calmer as at least he repeating MRIs

xxx

6

Hello Lea, I suffer with tremors or myoclonic jerks and take clonazepam and it has helped no end, I still get them but no where near as bad as I did. Hope this is of some help to you Janet x

7

Hi Can I ask how long ago it is since you had your last MRI? And what bits of you were scanned? I have my 3rd Nuero visit next week, and I’m worse that I was 12 months ago, but as my brain and c spine MRI was clear, don’t expect they will do another

8

Hi Apple pad,

I am waiting for appt for 2nd MRI’s…had my last one in july 2012. It was positive c-spine lesion and neg brain but there was something on the pons (and as i have hearing issues i expect that is the cause).

This MRI is of brain and c-spine and thorasic but NOT lumber as he thinks nothing new happened there. He also said the less u do on spine imaging the better the result. So only doing two parts MRI of spine will give better results than doing whole c-spine apparently.??!!

It is 14 months since this all started and 10 months since last MRI. So not long compared to others on this forum but i guess MS/whatever this is, is a wait and see and only time will tell.

To be honest i not expecting MRI to show anything new!(kinda hoping it will and then i can get treatment and move on) but nothing i can do but wait and hope that they can make my quality of life bit better and that i will have answers soon!

Good luck and message me anytime and we can keep each other informed along our journey LOL!!

Lea xx

9

Hope you get your dates for repeat MRI’s through soon, its such a waiting game. I have mt 3rd Nuero appointment tomorrow, had my MRI brain and c spine done last June, both were clear. I am worse than I was 6 months ago when I saw him last, and have had the most terrible nerve pain in my right foot/leg and no feeling in my foot. Stalled my car and nearly drove into some railing yesterday, did not feel my foot on the pedal! My mental state is not good, I get so confused and forgetful, it was funny at first but not anymore. Good luck and I hope you get some answers soon.

10

Hi All,

Wow was not expecting my MRI dates to come so quickly, usually they not know for rushing if you know what i mean!

Well its for 7th June…so 4 weeks…not bad eh?

Will keep you updated, but i may have the dreaded wait of 3 or more months for follow up appt, so we’ll see!!

Oh and this flippin constipation is literally a pain in my a**e !!! Been taking senakot, it helps a little but if i stop taking them…my bowels seem to do the same…cant stand it!

I dont know if that makes me feel worse or what but i am sooo tired this last 2 weeks, takes everything just to stay awake at work, and no amount of coffee seems to help! Cant take anymore time off and i have already cut hours down to part time…wow makes me tired thinking about today by just typing it lol!! Dont know how all you guys cope with this!?

Still wishing i will wake up tomorrow and it will all be gone! That i imagined it and i am my old lively self again…I really feel like i have gone from 21 in my brain to 81 !!! Not fair, i want the me that used to run 3 times a week, keep fit 2 times a week and was jumping around with my kids all the time. Now i have to sit down after putting the dishwasher on!! What the hell happened to me?

Sorry…feel much better now hahahha!!1 Thanks for the winge guys!

xxxx

11

Good to hear you don’t have too long to wait for the MRI :slight_smile:

Have you asked your GP for a prescription for your constipation? Probably more effective than over the counter stuff.

I’m afraid there are no easy answers to how to deal with fatigue :frowning: The MSS and the MS Trust do booklets about it though: you may find some good tips in them so it’s worth having a look.

Fingers crossed the MRI gets you closer to finding out what’s going on!

Kx

12

hi, had to phone his secretary after i had MRI on thursday and she said he had written; MRI abnormal, more inflammation and wants to see me asap.

She made me appt for 22nd July (4 more weeks!!|) and if he wanted it moved nearer she would call me. Now i know i have 1 lesion on my spine from last MRI and its still there (as i have copy of MRI on disk) and from looking at MRI i have at least 1 on my brain now. Which the phone call confirmed. But i still unsure. Is it at least one lesion in 2 seperate areas on CNS for a diagnosis? Neuro did say that if he found anymore lesions he would start treatment! Treatment for what? He never said MS and i think he is saving it up for this appt? Does that mean he will say it at the appt?

Sorry for the million questions but after 15 months and 4 more weeks til i get answers, i find that i am not really calm anymore. I usually stick head in sand and until someone says…“you have this” it helps me cope. But its like i have lost my patience now and i really just want to know so i can get on with getting better.

Any ideas on what to expect at this appt?

13

Hi, Has anyone here been offered an OCT scan? I googled it this week because I have been for a scan for an eye condition and an article said this was a quicker cheaper test to check for deterioration in MS.