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i'm new here and need help please

Hi, im new to this and not sure were to go. it started 5yrs ago with optic nuritis and i was diagnosed just over 1 yr ago after i had a really bad relapse well i never knew it was one because my neuro or dr never told me what they thought i had… so it was a huge shock and had a devastating impact on me.i was 33 at the time been married for just 1yr and have a 15yr old son.took 4 months to get over relapse … i think? I had around 5 weeks of being sort of normal and slowly all of the symptoms came back but not all the same time numbness around abdomen area still can not feel a thing to this day. Aching legs servere pain at night left arm the same as both legs tingling from head to toe optic nuritis 2 more time really bad vertigo. Neuro told me he would tell my gp to prescribe gabapentine and see ms nurse and see would explain everything to me in full(seen her she was lovely but searched internet to answer my questions) rang a few times when i was struggling but was told to ride it out.stopped ringing and saw gp instead he gave me gabapentine at first and told me to dlowly increase dose to 900mg a day that was no use so went bk and again increase dose i am currently taking 3600mg per day an also 120mg of amatriptyline at night .im still in so much pain at first it niggled during day and started to really get to me around 8-9pm now it is any time of day if iv walked ironed or even after washing pots.untill 2 days ago i had never spoken to any other person with ms i told her my story an she was great she has had this horrible thing for 13yrs.i see my neuro on the 29th and want him to change my medication but dont no what too. Help pls . 6 wks ago i was at my lowest my gp prescribed oramorphe to cope with pain my brother was getting married 2 days after seeing dr i was a mess i managed to see him marry but can not remember any thing untill the next day my husband was at work so i was at mam an dads and so far it has been the worst day of my life the pain was unbearable my dad was hugging me and i begged him to let me die and put me out of the pain i was in. He was devestated seeing his only daughter like that. Im so ashamed of what i said and soooo selfish iv felt guilty every day since im so depressed for mum dad my son and my husband im not the same person i was every one who knows treats me different i dont go any where without my husband or parents and i only go when i must. I know that there are many many more people suffering far more than me so i never look for sympathy its just so hard for me to deal with what im going through in the past year i had to sell our business then got a part time job which i loved and have been signed off work by dr since april .iv always been active worked none stop and when at home cleaned cooked and looked after my family 100% and now i can bearly cook a meal and then my husband has to help peel chop open im just a spectator.can anyone at all hep me i need to no what questions to ask neuro on thursday during consultation and write them down so i dont forget my memory is terrible or even if people are on different medication that may help me. Sorry about my life story .

Hi

You have absolutely no need to apologise! What you’re feeling sounds like a living hell. I get pain sometimes but nothing like a bad as it sounds for you. Another drug you could try instead of Gabapentin is Pregabalin. I would also ask if there’s a pain clinic you could be referred to.

Practising mindfulness meditation may help too. Last year I took part in a study funded by the MS Society that was about the effects of mindfulness meditation, and I found it helped me with dealing with pain. If you’ve not heard of it, mindfulness is simply the practice of noticing what you are experiencing in the moment - what you’re feeling physically, what your thought & emotions are, what you can hear, smell & taste etc. But the trick is to let go of the desire to label those things as good or bad. The aim is simply to accept things as they are.

When it comes to pain, the idea of noticing it & not doing anything about it sounds like it could be hell. But the strange thing is, it does help, and I find my experience of the pain lessens. I used to say I’m in pain, but actually that’s not true. It’s only a tiny bit of me that’s in pain. By being mindful of the whole of my body, I notice that almost all of my body is feeling different things other than pain. It’s a bit like looking at a map, and the pain is a feature on the map. Noticing the rest of my body is like zooming out of the map, and so the pain becomes smaller. Alternatively, I can zoom in on the map, and explore the pain. Then I notice that it’s not constant - it comes & goes, and has different feelings. Generally, if I’m wishing the pain in my leg would go away, I’m more likely to feel tortured by it. But if I’m able to give my leg permission to feel whatever it’s feeling, then it tends to ease off quicker.

I really hope you get the help you need.

Dan

hi stacey,

i agree with dan. mindfulness meditation is really good. i dont do it so often now but its a comfort knowing that i’ve got it on mp3 for whenever i need it.

another thing that would help you is being referred to an occupational therapist.

the OT comes to your house and asks which activities are causing you problems. he/she will then provide various aids according to your needs.

for example i had grab rails fitted to my bath and shower. we already had bannister rails on both sides of the stairs but if we hadnt she would have sorted that for me.

small things like a small rubber thing to help open jars and bottles made a huge difference.

a perching stool so that i can sit whilst cooking.

are you on a disease modifying drug (DMD)?

if not maybe you could ask your neuro. you’ll be given a choice so its helpful if you have an idea of which ones you would like to try.

also once your pain is being managed, you should find your nearest ms therapy centre.

they have all sorts of treatments. i go to trafford (16 miles away) and have hyperbarric oxygen therapy (HBOT) i dont know how but it makes me feel better. it helps the body to heal, premiership footballers use it.

also ask your gp to get your blood tested for vitamin/mineral deficiencies.

vitamin D3 is often lacking in people with ms.

Vitamin B as well. i get a monthly injection of B12 which makes me feel good.

on top of the awful pain you are in, there’s the fatigue which makes me feel like my body is shutting down. this can be managed though. you need to look at your daily activities and cut out those that are not absolutely necessary.

accept help when it is offered

it wont be like this for ever so hold on in there

carole xx

Hi Stacy

Sorry to hear your feeling so poorly. I just thought I would post what drug im on so you have some idea what may be available to you for your neuro visit on thursday.

Im on a disease modifying drug called Tysabri which is administered every four weeks by infusion. It is meant to slow progression of ms and stops relapses by up to 80%. I suffered similar symptoms as you but not as much pain. I have not had any relapses since starting Tysabri.

Regarding your pain, im sure there will be many more posts on here with good advice by people with more experience than me.

I wish you well and you get sorted soon.

Mick

I wanted to send loads of sympathy because you are having such a horrible time. But some reassurance as well, because there are lots of things out there that can help you. I’m going to put down as many suggestions as I can think of and you can talk about any that you fancy with your neuro.

The first thing that might help is steroids. These damp down your immune system and you may find that your symptoms are much reduced. I’ve had high dose IV steroids for three days a couple of times. It’s a bit miserable while you’re on them and for a couple of days afterwards but (for me at least) worth it for the improvement in symptoms.

If you see any improvement in your symptoms from the steroids, you should be able to make a case that you have relapsing-remitting MS. In that case, you are eligible for disease modifying drugs. As mentioned above, Tysabri is the most effective of these. On average, it reduces relapse rate and accumulated disability by 2/3. I would ask for that one if I were you - but there are other drugs that do the same kind of thing, namely Gilenya which you take in tablet form and several different drugs which you have to inject yourself with.

There are also lots of drugs for symptom relief - i take a few of these but not anyting for pain relief so the drugs you might take are a subject to discuss with your neuro.

As mentioned above, an Occupational Therapist can come to your house and see what can be done to make day to day living easier. I’ve also hesrd good things about meditation, in particular, mindfulness as mentioned above.

I wasn’t sure whether you can’t go out because of mobility problems or because you have lost your confidence. If it’s the first, there are lots of mobility aids you can use. If you get a referral to a physio who specialises in MS, they’ll be able to tell you what’s available.

Finally, you might think of getting some counselling, especially if your frame of mind is stopping you going out alone. I think you can get telephone counselling over the phone from the MS Society. Otherwise you might try your local MS Society group or ask your GP (I’d do that one last because I think the counsellors they offer are a bit mixed and may know nothing about MS).

Counselling is important because you are the same person as you were before the diagnosis and you can be as happy as you were. I know that sounds unlikely but it’s true and of course it’s what you and your family want. A diagnosis of MS is a huge bump in the road in anyone’s life, but you do keep going on that road.

Hope this helps.

I had a final thought, which is probably as important as anything I have already said. There are good and bad neurologists and you need to find a good one. If your neurologist is anything other than extremely keen to help you then you need to find a good neurologist and ask your GP to refer you to him/her for a second opinion. I know of a couple of excellent neurologists, one in central London and one in Edinburgh. If you need help to find someone in another bit of the country, then you might try posting on here for recommendations.

Please post again or private message (PM) me if there’s anytihng else you want to ask. There really is a lot of support and information available here.