Diagnosed This Morning with MS!

New diagnosis and before diagnosis
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Hi All,

I got summoned to my neurologist this morning to be told I have MS. Not sure it’s sunk in yet even though I was expecting it.

A brief summary of the last 2 years: I got diagnosed with CIS (clinically isolated syndrome) in December 2010 with a spinal cord lesion. This was following by a lumbar puncture where they did find the oligloclonal banding. I have had two relapses, one last year that wasn’t too bad and a really bad one February/March this year which was treated with high dose cotisteriods. I never want to take steriods ever again, they really didn’t agree with me. This was followed by my 10th MRI with and without contrast. We’re then on to today.

Basically I now have brain and spinal lesions and optical neuritis so my neurologist is refering me to an MS Clinic in Birmingham to begin DMDs (disease modifying drugs) maybe daily injections, maybe slow release, maybe tablets, he didn’t know. In one sense actually having a conclusive diagnosis means I can have proper treatment however to hear the words this morning knocked me for six! I couldn’t think of any questions to ask- at all!

I have no idea what the next step is, what DMDs are, what DMDs do… so I was hoping to pick your brains, what worked for you? If you had to advise me of a treatment route what would you suggest and why? Has anyone had any luck with any alternate therapies? Any suggested MS reading?

Basically a bit confused.

Sarah

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Hi Sarah scary stuff. I was diagnosed with rrms 28th september2010. Absolutely hate it keep thinking how much better I would be without it. Anyway soon realised I need to fight it with whatever is offered to me. so I started the DMD - disease modifying drugs - rebif 22 - it’s supposed to slow disease progression by about 30% and relapses by about the same number. In reality it means I inject myself 3 times a week. I have a nifty rebismart device to inject with that instructs you through the process. and yes it does hurt but only a little bit. I keep thinking at least I don’t have type 1 diabetes and have to inject myself 3 times a day! There are lots of other options. Look them up on this site or Msrc site. Also on these forums highlight treatment options to get discussions on different treatments. Best of luck and remember there is life with ms Min xx

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Hi Sarah

Sorry to hear about your Dx, but do keep positive about things.

How bad was your 2nd ephisode for you to need steroids - i’m trying to get an understanding of when to accept a recommendation for steroids as I had it offered for a mild event last time but declined. Numbness never completely went and I wonder if I should have done differently.

Best wishes,

Mr S

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Hi Sarah I was diagnosed last night and it’s still not sank in yet All I really know is that I have to go in hospital in 2 weeks to have a course of steroids

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Hi Sarah x I’m undiagnosed - going through the process now - so I don’t know anything about DMD’s. I just wanted to say hello, welcome & offer support! xxxjenxxxx

Same to you Foystess xxjenxxx

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Hi sarah…I too was diagnosed this year at the QE and will be starting dmd.I have to warn you they told me that in Feb but I still havent been given an MS nurse or any idea of when it will start.

I am sure you have been reading through all the old posts which will give you loads of info.Rizzo who is a newbies best friend with technical explainations etc has given loads of advice, aswell as the whole network of emotional support-- especially with symptoms you may have that are hard to explain without sounding nuts, put them on here and replies and answers will flood in.

I would recommend as karen did to me ,go on the ms decisions site and dmd drugs will be explained and enable you to work through whats best for you.

Dont go into reading everything you can find on ms.Stick to ms society or trust sites and remember it wont go away so dont overload yourself with info staight away and that whatever you read doesnt mean it will all happen to you.

Im in Halesowen if you need a chat

Pip

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Thank you all for your supportive lovely messages. Sorry it’s taken me so long to get back to you only I couldn’t remember the password that the ms soc sent me yesterday- so I’ve come to work to retrieve it from my e-mail!

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Flower Fairy Min

Thank you for the advice and words about yourself, do you have any side effects from the DMDs? I can’t believe you have a needle with AI!

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Mr Sensible. I hated the steriods whilst I was taking them and for the week afterwards but infairness after that I felt better than I had for weeks. But that was one helluva tough couple of weeks. But my body’s alway’s been funny with drugs and reacts badly- I cannot take any analgesic stronger than paracetamol as I’m sick in minutes- no morphine for me! Most are fine with methylprednisolone!

My relapse had the following symptons; totally drained (to have a bath and get dressed caused total weakness), shakes and difficulty with fingers, worsening of numbness, blurred foggy vision, difficulty getting words out and remembering what things were called and my l’hermitte’s (barbers chair) sensation changed from buzzing to painful. If I were you I’d try the steriods on a relapse (even if mild) because then you will know if it suits you and works should a big one happen.

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Hi Foystess,

Sorry to hear you’re in the same boat at me.

It’s more concerning for me that half my colleagues and family now have no idea how to act around me. It’s bizarre, everyone’s faffing around me, I swear I might shoot the next person that asks “are you ok?” “No, but I’m the same person I was the day before”. I should be more understanding as it’s probably as upsetting to them as it is to me (once it hits home).

It appears we’re on this long road together, if ever you need a chat I’m here.

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Thank you Kizzydane- much appreciated warm welcome x

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Pip

I’ve been under Dr Heafield at Worcester Royal, it was him who told me yesterday and is transferring me to Birmingham. I presume you’re right it will be the QE! Hey I was born there! Glad to hear they’re the same as Worcester although to be fair I cannot fault Dr Heafield he gives all his patients his e-mail address in case of a problem. They mucked my appointments up and moved me from December 2011 to August 2012! Anyway I had my relapse e-mailled him and he saw me the next day. You can’t ask for better!

I’ve read so much I am in fear my brain (lesia as well) will explode and I totally agree the most comprehensive information has been right here, so it’s where I’m going to stay.

Can’t believe you’re in Halesowen, I’m in Clent- small world

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Thanks again all xxx

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Hi Sarah,

A diagnosis is a lot to take in, even if you’re expecting it! I was diagnosed with a CIS in July 2009 and following loads of tests and another MRI I was finally able to tick all of the criteria and was diagnosed in December last year. Even though I had been waiting for the MS diagnosis since that first episode (my Dad has MS so I just knew that’s what I had too) it was still a shock when I finally did get it.

But the one good thing as far as I was concerned was the access to DMDs. I started on Avonex 9 weeks ago, it’s the weekly intramuscular one. The injections come in an automatic pen and it’s really easy to do, the needle is not very long at all and I can honestly say that I only feel it if I haven’t left the injection out of the fridge for long enough. I felt the side effects (aches, pains and fever) for the first two injections only and it wasn’t as bad as I’d expected it to be.

The DMDs take quite a while to build up in your system which is a bummer as I’m having a relapse now! Going to try the steroids this time (haven’t tried them before) so we’ll see if they work for me - hopefully so!

Anyway look after yourself and take your time getting used to the diagnosis, I’m still coming to terms with it.

Take care

Lynn

x

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I have an appointment at QE on April 30th… who do you see there those that go there??

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Go for a DMD. Does not matter much which you choose - they all have roughly the same effect/results. And, like Lynn said above, they do take a little time to build up in your system. Which one is your choice, and it has to be one that you will stick with (the reasons for my choice may not be valid for you, so I am not naming it).

Now you can start looking at alternative treatments as well. There are several. And you will find someone who says that “Treatment X” worked for him/her - this does not mean that it will work for you.

Personally, I have researched several, shortlisted a couple, had them shot down by medical professionals, and started looking again. I have to say, on the basis of one trial, that Tai Chi looks as if it might be worth working with - but something else might suit you better. Whatever you do, do not give up a DMD for an alternative treatment - you do not want to exclude yourself from NHS Treatment.

Geoff

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thank you for your help. It’s greatly appreciated. Not sure it’s hit home yet, too full of cold to think straight. Interestingly it’s made my tremor much worse! Will defo look into tai chi. Thanks again xxx

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Hi all, looking for some advice. Last week I was diagnosed with CIS. This follows decades of symptoms including first attack of uveitis 13 years as ago, stiff back for more than 20 years and weird electrical leg pulses. I have had brain and spine mri, lesion on T2 of spine and multiple brain lesions. I have to wait hour months at least for lumbar puncture. What I want to ask is about time frame, ie of those of you with CIS, how long before full blown Ms? I am 47 and feeling very, very anxious with the not knowing.

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Dear all

My daughter has been diagnosed with MS this week at the age of 17. I have been given 3 choices Tysabri with a side effect of pml, rITUXIMAB and Lemtard which cant be given now due to COVID. Any ideas on how people chose teh treatmetn?

Also is anyone aware of what is happening abroad in terms of advances?

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Hi i was also recently diagnosed with RRMS in July this year. I had a telephone consultation with the neurologist following my diagnosis and I was asked to consider 3 first line treatments (DMD) I weighed up the three suggested to me on the decision making tool. I then had an appt to discuss which one I had selected and had bloods taking before the prescription was signed off.

I was also made aware of the charity Understanding MS, you can register for a free book. They recommend a seven step process, one if the steps being DMD. They recommend dairy free, I’ve switched to oat milk and taking baby steps with the other recommendations, I also registered for a 6 week programme (enrolment now closed) but I’m sure they will have further courses. I have found this really beneficial as I really didn’t know very much about MS prior to diagnosis.

Good luck

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