Finally! Official Dx! :-)

New diagnosis and before diagnosis
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Finally got my dx of RRMS yesterday. Never thought it would be a happy thing, but it is. Finally know what I am facing and am properly in the system.

New neuro thinks I may have had it for many years, but also sure that since TM in April and MRIs in June that I have had a couple more relapses, which explains a lot.

He’s asking for more MRIs with contrast this time, and then we talk DMTs.

It is such a relief to be able to just focus on the DMTs rather than trying to work out what is going on and trying to communicate it to medical people.

And for anyone reading this who is stuck in Limboland and feeling the strain, hang on in there. Your emotions do settle, you do have more periods of acceptance and less panic and yes, it is possible to be happy again. Weirdly husband and I actually celebrated last night. Maybe we are peculiar… Oh hang on, I know we are peculiar :wink:

(I think my attitude is helped by a breast cancer scare I had a month or so ago - things could be a lot worse!)

Going to head down to the GP soon and tell them write in big bold letters on my files:

“THIS WOMAN IS NOT A HYPOCHONDRIAC! SHE WAS RIGHT ALL ALONG! DO NOT PATRONISE HER IN FUTURE!”

And then I am going to call out the GP who told me TWICE that I only needed paracetamol and there was nothing wrong with me, and did I really need another sick note? when I was in serious pain with a lesion on my spinal cord, and make him grovel on the floor in apology. Next on my list are all the Drs who said, “Well, you are very anxious, its probably just that, let’s do something about your mood” and then I’m going to post on facebook to all the people who have criticised me over the years for lack of stamina - including myself, “You have no idea how much stamina I have shown. I have been fighting every day. I am not weak, I am strong” And then I am going to make my life all about enjoying every moment that I possibly can (not really going to do any of that, except the last bit, although very tempted)

I know there are dark days ahead, but right now I’m OK.

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And congratulations I guess?! Your post made me smile, thank you!

Can I ask how long you’ve been waiting for the diagnoses and what steps did you take to get it?

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Hi Teal

I can completely understand how you feel I was just like you. The relief in having a name for the madness was overwhelming. The only thing is and I am not trying to bring you down but hold on tight. The next few months are a rollercoaster of emotions of which I have never experienced before. The high of finding out you have not got x or y is a great relief and one to celebrate. The reality will hit and be kind to yourself it is not the end of the world but grief will come knocking.

I am glad you have support it is important, I am struggling with the choice of DMT it’s a mind field. The doctors are of little help in my experience. I am sure you will find your way now you have something to focus on. I hope you can finally get your life back on track as limbo land is exhausting. Take care and well done for coming through the other side. Andy

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I think I’ve been through the grief stage - I’ve had six months of disabling symptoms and all my referral letters talk about my distress. I think it is probably harder if you are dx at the stage of having just a bit of p&n or numbness somewhere, but I haven’t been able to work or do many of my hobbies for six months now, so, my life has been very different for a while and I’ve adjusted to that reality pretty much now, as have those around me.

I’m not saying I won’t have panic and fear, I’m sure I will, but as you say, I can focus on the DMT issue now.

I understand that they won’t choose for you. I did tell him that I didn’t think I was the best person to make a rational choice about it, but I suppose that it is all so new that they are really still experimenting in a way, they just don’t know what the long term benefits or costs will be of each treatment so it has to be our choice. I just know that I am so, so lucky to have the chance of any DMT at all. My sister was offered beta interferon when it first became available as a trial, but they decided she was already progressive then. Only 8 years between us in age, but I have so many options that just weren’t available to her.

Is your MS nurse helpful? Mine is so lovely, I’ve asked to talk it through with her and I’ll see what happens, but when I told her I wanted Lemtrada the other week she didn’t blink, so we’ll see. I was thinking of opting for Copaxone while waiting for Lemtrada, but am very skinny and just read recently that it can be difficult injecting if you don’t have much to grab, so back to the drawing board on that one. I’m ahead of myself anyway, as usual, but I do like to be prepared!

Best of luck, I just messaged you on the other site to say thanks for the recommendation, maybe we’ll bump into each other at the QE one day,

Pip

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Thank you! Are you sitting comfortably? Here’s my story:

I paid for my first MRI in 2001, then another in 2005 because of neuro symptoms. To be fair, I had had a head and neck injury in 2000 but I was sure it was MS as sister had it. They only found one or two small lesions, but they didn’t do my spine. They said the results were ‘reassuring’, told me I had ‘post concussion syndrome’ and treated me as being hysterical because of my sister. GP at the time agreed with me that the symptoms were MS like, but, y’know, consultants trump GPs.

I had five years of not being very well at all, then five years of being really quite well with just slight residual tightness down the right side.

Then in Jan 2016 I started feeling really tired and went to the GP (different one as moved by then) to be fair, I didn’t mention MS, but symptoms increased and they were not taking me seriously, then dx beg April with severe Vit D deficiency after I insisted that they test me, and then end April symptoms of cervical TM, but not believed, so had to pay for referral to consultant and more MRIs.

MRI showed the lesion, so dx partial cervical Transverse Myelitis and some inconclusive lesions on brain (probably the same one from 2001/2005 plus three tiny spots in the wrong place for MS) . Lumbar Puncture in July showed positive O bands. Consultant said possible MS and to wait for another attack before treatment or MRI, and disagreed that new symptoms I was experiencing were actually new relapses. He said he would not refer me for another MRI even if I paid for it because it would worry me.

So I pushed and pushed for official referral to local MS nurse (I contacted her back in April, so we had unofficially spoken four times; she is a life saver!) once I got the referral to her, I asked her to refer me privately to a different neuro who had been recommended and who I had heard was very thorough about taking symptom history.

Saw him yesterday, he agreed to take me on his NHS list.

So, yeah, stony broke and exhausted, but got there in six months or seventeen years, depending how you see it!

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hi pip

you are right to avoid copaxone if you don’t carry much fat.

i was on copaxone for 6 years and by the end my injection sites were (and still are) a proper mess.

i’m now on tecfidera which is a doddle in comparison.

lemtrada is an amazing drug.

i can ask for it if i have to come off tecfidera.

there are other new oral drugs so you’re not stuck with injections.

good ,luck

carole x

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Thanks Carole, I know people won’t have much sympathy (they never do) but I am finding it really hard to maintain my weight since this relapse began. The only way I’ve been able to stay out of the danger zone of underweight in the past is by eating lots of cake and butter etc.

Now I’ve sorted my diet, the weight is dropping off me. Doesn’t help that for the first time in my life I have no appetite, I could easily forget to eat at all for a day. Weird because I am known for never missing a meal and if previously forced to by circumstances, caught up on whatever I missed before immediately eating the next one.

Thought it might be depression, or the Pregablin, or can the MS wipe out your appetite centre or something? I bought a ready meal and ate some cake the other day to see if it was just my mind not finding wholefood appetising, but hated it, and it just made me feel more sick and less like eating later on. I look in the mirror and see this haggard old woman, not good for the self esteem. I know I’ve lost muscle, so that accounts for some of it. But yeah, no problems with injecting myself from psychological point of view, just nowhere to stick the needle.

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hi again

my weight has been going up and down in the 8 years since my diagnosis.

i never weight myself because i know if i’m getting fat.

sadly it’s just my tum that’s too big now.

carole x

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Hi, I totally get you about celebrating the fact that you`ve got a diagnosis of MS.

I know it isnt MS you are celebrating.

It`s the fact that you now have proof you are not imagining, making it up, going loopy or anything else.

Why not change your GP?

Dont expect a huge apology…I also felt aggrieved when my 16 different neuros messed me about.

pollx

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Oh I’m not expecting any apologies! It was just amusing to imagine it.

There is only one GP practice that I can reasonably get to in this area, and it is now part of a larger group containing all local practices, so there’s no choice at all from that point of view.

I wrote to the Practice Manager asking to speak to her to discuss which individual GP within the practice would be best for me, but she won’t discuss it with me.

The GP I have been seeing is OK, but she just doesn’t have appts available and seems to be on holiday all the time, so I can’t get appointments for four weeks usually unless I take an emergency appt, when they tell me off because it isn’t an emergency. But there has to be a happy medium between ‘see me now!’ and ‘see me in a month’. It’s all very annoying.

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I’m with you on appetite (mine vanishes when a relapse appears) and also on the trials and tribulations looking in the mirror and seeing a skin and bone article that seems to have turned up early for the Halloween party. It is so important to get into good habits on nutrition and exercise - we need all the help we can get with MS, and a few extra pounds to give a person a bit of ballast for tough times is something I have felt the lack of. But you know all that.

Welcome to the club, sort of. Shocking that they wrote you off as a hysteric because your sister had MS rather than doing the sensible thing of taking your FH rather seriously. Ah well, water under the bridge now. If I were starting from scratch, I would go for Lemtrada like a shot, by the way. I was dx in 1999 and on Avonex for 10 years and it was great for some years and thank goodness for it. When it stopped working, I changed horses to Tysabri (5 years). But there was a fair amount of damage done by the time I got on Tysabri, and I would rather have dodged that if I had had the chance.

Good luck, Teal.

Alison

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Hi Teal

I just read on your post that you go to the QE is that the Birmingham hospital?

Many thanks

Julie xx

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Yes that’s right. Are you being treated there too?

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Yay!You must do all of that!! Why not!!