Forum

Teetering on the edge of diagnosis

Hi everyone

Just thought i’d make a quick post by way of introduction etc etc

I was ‘diagnosed’ with MS (in that after tests they said I might have it and then again I might not!) 35 years ago. The symptoms that had taken me to the doctors disappeared almost as soon as they had come and I thought nothing more about it.

I’ve been married and divorced twice…brought up three children pretty much by myself and packed the youngest off to university last year. This was now going to be MY TIME. Do what I want, when I want and so on and so forth.

However mother nature had other ideas and I started getting neurological symptoms and after an MRI (with just a lumbar puncture left to seal the deal) it would seem i’m being diagnosed with MS again - only this time I think they mean it!

SO - here I am trying to find out as much as I can before I embark upon my new life. Feeling rather bitter and twisted at the moment…life has such a way of kicking you in the teeth sometimes doesn’t it!

I am usually a very upbeat person though and I don’t doubt that side of me will resurface soon. I look forward to getting to know some of you in the future.

Juls

Hi Juls, so sorry you are going through this. If it does turn out to be MS then you will soon realize it’s different for everyone. I was diagnosed 3 months ago, yes I have pain and numbness but the worse thing for me is memory. For others their memory is fine. I hope you stay strong, I try to, and deal with whatever the future holds in a positive way. I wish you all the best.

Hi

I am in same boat as you. In 1990 I had an attack of l’hermittes. Docs thought I had MS but then said that it was a result of radiation treatment I had.

Symptoms went - years passed I had 4 children etc. Then in 2005 I had an attack of numbness and after clear scans I was sent packing. Then again in 2008 another attack which lasted 6 weeks. But this left me with a foot drop which only appeared after a long walk. In 2011 I had a scan which showed lesion and neuro blamed the radiation treatment I had in 1990.

In 2012 I saw a new neuro who said that I had benign MS since 1990 and I may have entered into a slow progressive stage. However I didnt get a dx as the lumbar puncture was normal.

So basically I am still in limbo !

Moyna xxx

Hi Juls, no wonder you feel aggrieved hun!

As you say, youve dealt with bad relationships, sorted the kids out, so why shouldnt you have some well deserved me time`.

You do sound a strong woman with the will to move forward…be that with or without an MS tag.

Once you get that dealt with, do your best to accept it and be prepared for some good and not so good days. Never push on when you need rest. Look after yourself.

luv Pollyxxx

Hi Juls,hope you had a good festive period. Even if you are Dx with MS it’s no the end of the world so calm Doon! Ha ha. Loads of ppl manage just fine with the right meds,it affects everyone different some ppl very little. Also a L/P is just another tool that indicates you may or may not have M/S,some ppl with positive L/P are MS negative and vice versa so don’t take it as gospel. Just try and stay calm and enjoy life as best you can. Hope you get good news and 2016 is a great time for you…Terry

Thanks for all your comments so far…much appreciated

In all honesty - I want the LP to come back positive for MS weird as that might sound…because then I can start to get treatment and I won’t feel like i’m being a fraud. I’m most definitely not panicking about it - just want a diagnosis. Sadly my new year was tainted as my cat died on the 30th December. Still - onwards and upwards.

Wishing everyone the very best 2016 that they can possibly have.

Juls

Me again.

I didnt tell you any of my history, but I was without a diagnosis for a while, and had all the tests which proved nothing…and then was wrongly diagnosed with PPMS for a few years, because they`d ruled everything else out.

Later that dx was quashed in favour of HSP, which remains today.

HSP is similar to MS, but in the long term, and although nasty, isnt quite as bad as PPMS for most people.

I, like you, wanted a dx of MS, so I could move on too.

Dont be too eager to wear what may turn put to be the wrong label.

luv Pollx

Hi Poll

I think I perhaps phrased my last post badly. I’m not saying i want it to be ms…i’m saying I want a diagnosis. If the LP proves it’s MS then I can move on. If it’s not - then it’s back to square one looking for a diagnosis. Just don’t want to be in limbo any longer.

Agreed poll x

I get you hun. Limboland is a very lonely, frustrating and crappy place to be!

Pollx

Update!! I had an appointment with a new neurologist today. He took a very thorough history and asked me all about what’s going on at the moment. He will be reviewing my MRI with colleagues at Salford Royal later this week. I should be getting an appointment through for a LP to take place next week and then hopefully within a week or so I ‘may’ have a diagnosis.

I asked about treatment after diagnosis, as due to extreme fatigue I havn’t been to work now for a few weeks and he mentioned steroids…i’ve had a little look on here for information on them - but obviously everyone’s experiences are different. But does anyone know if they’re likely to give me my oomph back?? I do so miss my oomph…and my colleagues :slight_smile:

Thanks in advance for any info!

Juls

Hi Jules,you may get some oomf back,just watch for a come down when you stop taking them also make sure you don"t take them on an empty stomach. I had them and they made me sick as a dog. T

Hi Juls,

A pleasure to meet you. I can’t add anything that hasn’t already been said (they’re a canny bunch these regulars).

Except … You and I are of a generation that knows all about oomph. Been there, done that, and sewn the patches on the T-shirt ourselves. You’ll also know that oomph is a state of mind (or class A drugs). Personally, I use state of mind. That way I know its organic.

As for your colleagues, I haven’t had the pleasure. Or have I?

What’s brown and slimy and goes from oomph to 6omph in 4 secs?

Come on. Everybody can join in this one.

A.

Shouldn’t be a problem with taking them on an empty stomach…they’re gonna be IV steroids Terry :slight_smile: lol

Sorry, can’t answer either of those questions!