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Newly diagnosed

Having only been diagnosed with Multiple sclerosis a week ago after 3 months of weird and wonderful ailments and a week in hospital. I have to admit when I was told by the Neurologist I wasn’t upset or in limbo , I was just pleased to find out that everything that had been happening was down to an actual illness not just as my GP told me 3 times ’ Labyrinthitis ’ which in my heart I knew it wasn’t.

At present I’m experiencing excruciating pain in my elbows and legs , hoping the new drugs work.

Be nice to hear from others who can help me get my head around all these new yet not exciting weird and wonderful things.

Jacq xx

Hi Jacq

I was diagnosed 3 weeks ago with RRMS after 12 months of tests. It was a good feeling to be out of limbo land and I feel with a confirmed diagnosis I can now move on a bit.

I was offered 2 drugs and have chosen Copaxone (injections), just waiting for all the paperwork to be signed off which should take another 3/4 weeks.

Have you been offered a DMD?

My left arm and both hands are painful and tingly most of the time, due to my spine lesions this won’t improve but I have kind of learnt to live with it and with the help of Gabapentin!

Anyway take care

Mel x

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Hi Mel

I am awaiting an appointment with a MS nurse who hopefully will talk to me about the injection or oral form, I’m not sure which one I would prefer doing .

I’m off to the Dr next week to pick up my Gabapentin ,so great to hear that it can possibly help my constant tingling body. It gets so bad that it hurts when my husband touches me or cuddles me which is heartbreaking for him and me x

May i ask What a DMD is?

Kind regards and have a lovely rest of the evening

Jacq x

Hi Jacq, Sorry to hear of your recent diagnosis, I’m quite new to this forum and like you was very quickly diagnosed after hardly any symptoms and only spending 10 nights in hospital. I hope you get an appointment soon with your MS Nurse, mine is lovely. From having NO information for 3 months she gave me loads of stuff to read. DMD’s are Disease Modifying Drugs, My MS Nurse said I’ll only be referred if I have another relapse in 12 months. I think I’ll know more after seeing my neurologist who specialises in MS. JEM xx

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Hi Jacq

The gabapentin does take the edge off although it took me a while to find the correct dose, a bit of trial and error to begin with.

I went with the injections because minimal side effects have been recorded, I am still working and want to carry on for a few years yet.

I am quite well at the moment, the fatigue floors me sometimes but I am able to cope.

Its a massive learning curve and I am still trying to get my head round it all, I have good days and bad days but I feel I have come to terms with it quite well.

The DMD is the disease modifying drug, injections or tablets.

Take care

Mel x

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Hello and welcome to Jacq and Jem (and Mel of course)

I’m sorry you’ve had to find your way here. But you each seem to have taken the diagnosis in your stride. I’m not a newby, more of an oldie. I do tend to haunt this board just in order to try and assist the newly and un-diagnosed with the benefit of my experience. (Now 22 years in! Lucky me.)

As Mel and Jem have said, DMD stands for disease modifying drugs. These are supposed to reduce the number and severity of relapses. There’s a helpful page on the MS Trust website which gives details of the various types currently available: https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid You should note that each DMD has an average relapse reduction rate and also aims to make relapses less severe. You need to weigh this up against the potential side effects. So for example, the old style injectable beta-interferons and Copaxone each have a relapse reduction rate of about 30 to 35%, but not generally too many side effects. In particular Copaxone has a very low side effect potential so long as you rotate your injection sites (go for the fattest parts of yourself - with me it tended to be my bum!!)

In most cases, you’ll be offered a choice of the ‘Moderately Effective’ drugs which includes the injectables plus Aubagio (a tablet - which I think has too many possible side effects for its low relapse reduction rate!) and also Tecfidera. Tecfidera is another tablet, but it has a good relapse reduction rate of about 50%. Side effects from Tecfidera can be managed if that’s what you opt for, ask on here for how people have managed the potential iffy stomach issues.

Jem, I’m really surprised that your MS nurse thinks you should only get a DMD if you have another relapse! Hopefully your MS specialist won’t think the same way. Relapses can cause long term damage, so getting onto a DMD that suits you and your lifestyle is really important - to avoid as many relapses as possible. So it may be that you’re happy with not getting a drug yet, if so, good - it’s all about personal choice. If you’re not happy and want to start a DMD, then ask your new neurologist when you see him/her.

Jacq, if the Gabapentin doesn’t help with the tingling (always sounds such a nice word for a horrible symptom!), then see your doctor and ask to start something else, maybe Amitriptyline? It’s a good drug for burning and tingling, but needs to be taken in the early evening. That way it helps with the symptom and also helps with sleep, but avoids any ‘hangover’ type side effect the next day.

As Mel has said, the world of MS is a huge learning curve. Try to avoid random googling of symptoms, use this site (the tab marked ‘About MS’) or the MS Trust website (type into your browser ‘MS Trust’ and whatever you want information on, eg ‘Fatigue’, Mel). Or of course, you can ask us. Just be aware that while people like me will have ideas, thoughts and experience, we aren’t an equivalent to your MS nurse or neurologist, so treat information on here reasonably lightly, don’t rely on it as fact.

Best of luck.

Sue

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Sue, I’m on Nortripyline to help with the internal vibrations I sometimes feel but I suppose I will find out more in June xx

Hi Jem

If the Nortriptyline doesn’t do the job with your internal vibrations, you could ask for a different drug.

I started having what felt like palpitations a few years ago. I couldn’t quite work out what it was, kept asked my husband to feel my chest and stomach for the shaking I could feel. He never could. I eventually worked out that it was a tremor. The drug I found helped was Cloneazepam. I was already taking Amitriptyline for burning and tingling feet and legs.

We are all different though,and our reactions to drugs are different too. Years ago, I thought I couldn’t cope with the side effects from Amitriptyline, then I found out that the best time to take it was early evening and now I can take it without any trouble.

You perhaps need a total overhaul of what symptoms you have and the drugs you take for them as well as having the conversation about DMDs. Good luck for June.

Sue

Fingers crossed its working at the moment. I guess I’ve just got to take each day as it comes and go with the flow.

Hello everyone,

I lost my sight in my left eye at the beginning of December and was referred to an eye consultant. After the 2nd visit he told me I had optic neuritis which was an MS related episode. My eyesight is improving but still not right and has good and bad days. Is this normal?

I have a neurologist appointment in October which seems a long way off. I’m seeing the eye consultant again in May. I feel like I’ve been left in limbo as the eye chap was “well you may never have another episode” “let’s treat it conservatively” I’m very confused with it all and now looking into it I have lots of other symptoms. Went to see GP which was a waste of time. Feeling rather worried and disheartened by it all.

Would be interested to hear how other people have got on.

Thank you

Sharon

Thankyou everyone for your kind words of encouragement and advice . I have been spoken to about the injection drugs aswell as the oral drugs , I’m assuming my MS nurse will talk it all through with me.

I’m really struggling today and have had a few emotional outbursts this weekend. I am struggling with my right arm and cannot lift a cup of tea without excruciating pain, so I’m having to remember to use my left arm or get a family member to lift everything heavy. I then burst into tears at dinner time because we were having beef casserole and I couldn’t remember the word ’ dumplings ’ … I have become really forgetful and where I’m usually so organised , I keep forgetting everything… is this something others are experiencing?

I’ve got the Drs Tuesday to get the drugs to help my tingling / pain and then hopefully I will get my appointment with my MS nurse.

Xx

Awww Jacq I think the emotional outbursts are pretty normal, i’ve had a few myself. Its all part of the process. Don’t beat yourself up about it, its a massive life changing thing were dealing with. I thought I was coping with it all pretty well but i’ve been quite fed up recently.

Something as simple as putting the washing out has become hard work and I’ve had to send for reinforcements. My kids have been great and are always willing to help.

Hopefully the gabapentin will help you with the arm pain.

I had moments where I forget what im saying and just stand there looking daft because I can’t find the right word.

hope drs goes well

take care

Mel x

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Hi Sharon

I really feel for you as mine started with my eyesight. I lost my vision in my left eye in January and after numerous visits to my GP and opticians who both fobed me off , I became so ill ( I couldn’t walk , was so sick that I lost a stone in 20 days , couldn’t eat or drink , lost the feeling in my tongue and with the sight loss ) I was rushed into hospital , admitted within a few hours , had MRI scan the next day and lumber puncture a day later … 3 days later the Neurologist came to see me and told me he was pretty sure I had MS and the lumber results would give me a definite answer. I got my results last week and yes was diagnosed with MS .

On the plus side I got through my wedding day on 3 days of intravenous steroids whilst admitted in hospital and was able to walk down the aisle and enjoy my day.

The funny thing is I lost my sight 10 yrs ago and they said it was optic neuritis back then … with that and now this they think this is my second bought … whatever that means xx

From first symptoms on the 4th Feb to being admitted into hospital 25th Feb to being diagnosed on 18th April … I guess mine happened very quickly.

I think sometimes we just have to let the medical team do what they need to do but yes being I limbo is the worst part .

Big hugs to you xx

Well my GP went against the Neurologist , he advised me on 2 different drugs Gabapentin or Amitriptyline but chose to try me on Gabapentin. … my GP decided to try me on Amitriptyline 1st as less side effects and she has found this drug works better for my burning sensation in my arms. Trial and error I guess.

But typical I receive my new drugs today but what happens , I get a severe ear infection and get put on anti biotics , so advised to leave my MS drugs until I finish my Ear infection medication , so I can tell what side effects the MS drugs have if any . Fun Fun Fun xxx

Hi

I agree with your G.P. Amitriptyline is a great drug for burning type pains. The only thing is, you need to take it in the evening. If you take it during the day, or too late at night, it can give you a kind of ‘hangover’ type feeling. It’s different when you’ve been taking it for some time. I can take it earlier in the day because I’m quite well used to the drug.

So once you’ve finished your antibiotics, try the Amitriptyline. Take it by 8pm and you’ll find it helps with sleep as well. If it doesn’t work for your pain, go back to the G.P. and ask for Gabapentin.

I hope your ear gets better soon.

Sue

Hi Sue I started it on Friday night and it’s definitely helping me sleep through my pain and I find my arms aren’t hurting as much but I still am trying to remember to take it every night as if I’m out or busy I forget at 8pm and end up taking it later xx