Further to first post

New diagnosis and before diagnosis
1

Hi all,

Further to my first post, I added another comment the other day but nobody has responded so wondered if best to start new thread?

It’s been a few weeks since I came out of hospital and following the IV steroids some things have improved - I no longer have the spasticity in my right leg, can now walk normally with it and bladder has improved as in I can now wee although it still doesn’t feel like it did ‘before’ the total retention and is a conscious effort rather than an automatic thing. This sounds really weird but I now get a vibrating feeling down below after I wee (sorry too much info and no it’s not fun!) The tearing pains in my right hip have gone.

On discharge, consultant Neuro said I would be seen in clinic for follow up in 3 months but to report any ‘new’ symptoms if they occur, and I’m now not sure whether what I’m experiencing is continuation of previous symptoms or new ones. I am now getting waves of heat across both feet and when I have a shower it is actually painful when the spray first hits the top of my left foot and left shin, these areas are very sensitive to touch and feel bruised if that makes sense? Sometimes right shin also feels hypersensitive and painful or numb and tingly, or itchy. I also keep thinking I have a fly crawling on my ankle but there isn’t!!

My eyes hurt all the time like eye strain and although I had an eye test earlier this year, I’m wondering whether to see an optician for a check up!

Fatigue is hitting me like a brick out of nowhere at random times, and the last couple of days my co-ordination seems off - I keep dropping things (although on a lighter note, hubby is not accepting this as an excuse for not cooking lol!)

My LP that I had in hospital was still awaiting some results so I’m wondering whether to ask for these too.

I’m really confused as to whether the things I am experiencing now are residual from before or are new, I have had constant symptoms since this time last year, but in different parts of body and to different degrees so no overall remittance but remittance of certain symptoms.

Sorry to waffle on - I haven’t given it all much thought recently due to other things taking priority with the kids.

The Neuro said in discharge report that ‘most likely cause is disease like MS’ but indicated that it could take a long time to be sure either way. Do LP results affect the overall picture??

Thanks so much if anyone has had time to wade through this xx

A worried Minnie Mouse

2

hi MM

i haven’t seen your other posts but then again i’m away with the fairies a lot of the time!

write down a list of what has happened since your last appointment with approximate dates.

it does sound like you have had new symptoms so let the neuro know.

LP shows oligoclonal bands which indicates ms or maybe other neurological disease.

sorry if i’m not making sense, i’ve had a horrible few days and i’ve hit the gin - hard!

good luck

carole x

3

Hello Minnie

It’s a totally confusing time, the early days with MS (assuming that’s the ultimate diagnosis). You don’t know what’s new and what’s just taking time to remit. You’re not even certain yet that it is MS!

So, you’ve got a couple of months before you see the neurologist again, meanwhile you’ve been told ‘tell us if you have new symptoms’! Have you been given the contact details of an MS nurse? That would be a good person to talk all this stuff through. And have you received a copy of the letter sent by the neurologist to your GP? That might help matters too.

Why not phone your neurologists secretary and ask for a) the contact details of your MS nurse service, b) whether they have the results from your lumbar puncture, and if so have they been sent to your GP, also c) has a letter already been sent to your GP to report on your hospital admission and general (a bit iffy but) probable MS diagnosis? If a letter or report has gone to your GP, ask for a copy of the letter. In general, patients are always copied in to any letters sent about them, so it might be in the pipeline already. (I often get copy letters which have ‘dictated 13th June, typed 10th August’! And at the bottom ‘checked but sent unsigned to avoid delay’!!!)

It is impossible to know what is new and what is residual from the relapse. It can take months and months for remission, even partial remission. So it could still be from the initial inflammatory event that you have ongoing symptoms. Then again, it could be new inflammation. In a way, only you can figure this one out.

Why not start a diary, go back as far as you can and write down what happened when, what symptoms you’ve had, how long something lasted and whether there has been recovery from some symptoms. By writing it down, sometimes you can organise your own thoughts and decide for yourself what is new and what is residual.

It’s a good habit to get into anyway, keeping a health diary is something I’ve been doing now for 7 years. I started writing it on paper, but now have an app on my iPad and phone, so I can keep track. It’s just as well I started doing it on an app as now I can’t really write!!

As Carole said, the LP results do add to the general picture built up by the neurologist. S/he uses your history, physical examination, MRI results and LP (plus sometimes Evoked Potential tests) to diagnose you. Something like 80 to 95% of people with MS have positive Oligoclonal bands in their cerebrospinal fluid but not in their blood serum. So a positive LP would probably cement the diagnosis. A negative LP wouldn’t rule MS out, but it might alter the picture for the neurologist.

Best of luck.

Sue

4

Hi Sue,

as I am in the same situation as MM, I like the sound of the app you mention, can you tell me what it is?

thanks.

5

Hi

The diary app I use is called Day One. (Other apps are available!) You can generally download a free basic version of most diary apps, but for full functionality, it’s a case of paying for it. Which is what I’ve done. But I’d try out a couple to see how they work and whether you like the way they work.

What I do like about mine is that you can apply ‘tags’ to posts, so I’ve got different groups tagged which I can bring up the list of. So for example I’ve got a tag for UTI, so I can tell when I’ve had a UTI (not for nearly a year!) and one for eye problems as well as the dentist, etc. I’ve also set up tags for my OH and even my cat! (So I know when he’s had his Advocate, or if he’s had to go to the vets for anything - cat not husband that is!)

It helps that the app works on my phone as well as iPad, so if I think of something in the middle of the night, I can add it, or I want to check something while I’m out - maybe in a doctors appointment - I can.

Sue