northernlass 05/04/15
Last reply 3 years ago
Anniversarys to celebrate and some not..

Today is my 47th birthday.. I feel quite happy today just doing things that I like to do.. had a nice lay-in.. Opened my gifts and cards with my kids..cooked a vegie Breakfast which I had for lunch.. caught up with all my birthday wishes on FB.. and now watching “Game of Thrones” box sets.. bliss but yesterday I felt quite gloomy as a year ago yesterday I had my Brain and Spine MRI scan… and now my lovely birth month is tarnished with that and also my DX which was on the 28th of April last year. Feeling a bit lost about my MS at the moment.. been living with these symptoms for more than a year now and they haven’t gone away.. not had medication other than steroids in June last year which helped me feel better but didn’t stop it completely and was given Gabapentin last month but I had to stop taking that as it made my legs/ankles feel even weaker and made mobility more difficult… and now I am just left with a wobbly walk and slight numbness down my left side, balance issues, fatigue & bladder issues.. I must go back and see the Neuro but I’m scared they will say I am worse and there is nothing they can do to help me… or give me a medication that has terrible side effects for me like the Gabapentin… 🙁

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stumbler
3 years ago

Happy birthday, @northernlass , another Arian!

I can understand you feeling melancholy at this time. But, we look back and we look at history. It’s happened and we can do nothing to change it.

We’re now living the present and we have to plan for the future, using the lessons we’ve learnt in the past.

And, in the past, Gabapentin didn’t agree with you. So, for the present and the future, you need pain management which does the job. Ask to go on Pregabelen – this is similar to Gabapentin but may be tolerated better.

Gabapentin is cheaper than Pregabelen, that’s why you get it first!

I understand your feelings about the Neuro, but we have to accept that we have a degenerative, neurological condition. We won’t get better, but we do need to do what we can to ensure that we deteriorate at the slowest rate we can manage.

Personally, I don’t think my Consultant wants to see me anymore. I saw her in January and I asked her some awkward questions – MS doesn’t seem to be her strong suit! I was referred onto an MS Specialist, who I have just seen and my only way forward seems to be to participate in trials.

So, it’s down to you and me to manage ourselves.

Anyway, it’s your birthday. Get your kids to make a fuss of you! 😉


outlier
3 years ago

Happy Birthday Northernlass 🙂


northernlass
3 years ago

Thanks @stumbler I’m just feeling a bit maudlin because it is a year that nothing much has happened symptoms wise.. I guess the more positive side is that I got awarded PIP (and back dated.. 🙂 ) I bought myself an automatic car which is so much nicer to drive and I got a Blue badge too .. so some nice things have happened because of having MS… will go back to see about more expensive drugs with my MS nurse or maybe another MRI with Neuro.. and will use the ad line of “Because I’m worth it” and see if they can help me.. 😀
And thanks @outlier 🙂


northernlass
3 years ago

and as for kids they can stay up in their rooms so that I can watch my “Game of Thrones” which is quite rude or violent in places (seems every time I pause it because one of my kids has come into the front room it freeze frames on a naked body or someone getting stabbed… !!! ) But they have done a nice bit of spoiling me earlier 🙂


stumbler
3 years ago

Ha Ha, @northernlass , I can hear the kids giggling up in their rooms, saying, “Mummy’s watching porn…………again!” lol 😆


krisp
3 years ago

Happy birthday @northernlass
I know it’s tainted with the other anniversary, but think of it this way, you may have ms as a shitty gift but you have the gift of enjoing your birthday with your kids, something worth more than anything in the world


lina
3 years ago

Hi @northernlass Happy belated birthday. I haven’t been on here for a while as I went back to work so now doing 20 hours a week. I was on Gabenpentin and it was right for me so I asked my GP if I could change to Pregablin I’m on 1 x 150mg twice a day I was on 1500mg Gabapentin so I was told to stop Gabapentin altogether and start Pregablin boy did I feel the side effects I’m not too bad now but think I need to go on higher dose as I am feeling the burning pain in my back more now the weather is getting a bit warmer and I love the sun if you can get the Pregablin from your GP its just trial and error with everything and I am not on any other meds.

Sounds as though you had a fab birthday.

Lina xx 🙂


northernlass
3 years ago

Lol @stumbler I suppose it could be considered a bit “PORN” in places but with a storyline !! 🙂 and thank you @krisp ,you are right that it is enjoyable to spend my birthday with my kids (I say kids but more like young people .. 18 and 15.. ) I do feel lucky in so many ways as they are both fantastic people and help me a lot 🙂 and thanks too @lina for the birthday wishes. I am worried about all the side effects that some of these meds can give us.. I am anaemic and so the doctor gave me iron tablets to take… and OMG tummy pain and constipation 🙁 along with upset tummy 🙁 and don’t take them within two hours of having a cup of tea and having eaten egg !!… not enough hours in the day to squeeze in 3 of those tablets… 🙁 Hope a higher dose of Pregablin works for you Lina .. having back pain is so draining I’m due Cortasone injections in a few weeks so hoping they give me a bit of relief from my back pain… Best wishes


cameron
3 years ago

@northernlass – I’ve posted this before, but DO CHECK that your back pain is not a result of vitD deficiency. Mine was and it only came to light after I’d had surgery and been on industrial strength painkillers plus anti-inflammatories for a few years…. and if I hadn’t demanded a VitD blood test I think I’d be taking them still!


northernlass
3 years ago

Oh how interesting @cameron I had a blood test a few weeks ago to see if my 8 months of taking 5,000iu Vit D3 supplements had brought my Low levels of Vit D up but I seem to be worse off with my levels having gone down from 54(?) to 36 which now puts me in the deficient category .. My B12 and my folic are normal, calcium levels were spot on where they needed to be but my Iron is low and was told that lacking in one could stop the absorption of the other.. (Not sure which was around it is..). I have been asked by the hospital doing the injections to come in for a blood test to check I’m not too anaemic for the injections (!!!! Been waiting since June last year for another dose.. this will be my 6th lot in 5 years… and I know I can have up to 3 in a year but it has just never worked out that way for me.. 🙁 ) How do I find out if my back pain is due to a Vit D3 deficiency..?.


cameron
3 years ago

Well, it was very strange! My back started to hurt in 2005 and it gradually worsened. It wasn’t helped by a fall on a friend’s hall carpet runner (on a parquet floor), when I skidded and fell backwards my length. That tipped the back pain into sciatica. Was X-rayed, had physio then was referred to an orthopaedic surgeon. MRI showed that a piece of vertebra was touching a nerve. I had a course of three injections, which unfortunately had no effect. Next step was a discectomy, i.e. the removal of that little piece of vertebra (not the whole disc). That sorted the acute pain and I just continued to take painkillers. Over the next two years the pain worsened, to the extent that I couldn’t turn over in bed or do breaststroke. If I sat at my dining table looking at my computer for more than half a hour, I would be in acute pain for the next 24 hours. At my neuro’s appointment that year, I happened to ask whether I should be taking a vitD supplement. He shrugged his shoulders and said I could if I wanted. I’d started reading the MS-research blog that year and was noticing that vitD was becoming a recurrent theme in their posts. The next time I saw my GP I asked if I could be tested. She was a) surprised that I’d asked and b) reluctant… but she’s a nice lady and has always been sympathetic to my MS issues. She agreed, I had the test and a few days later she rang me at home. Well, she said, you’re vitD deficient bordering on the very deficient: please pick up a prescription for supplementation! I forget the dosage but it was below 1000iu. Three weeks on, it was time to re-order my monthly repeat prescription and when I looked in the medicine cupboard I noticed that I didn’t need to renew my painkillers – plenty left. Next thing was I decided off my own bat to continue supplementation after my prescription had finished. I’d read on the blog that 5,000iu was the optimum dose so bought it on Amazon. By that time, I’d realised that it was definitely improving the back. I could do breaststroke again, I could twist around in bed and I didn’t need painkillers. So I told the GP and asked her if she’d prescribe it. She said she’d happily prescribe anything that was endorsed by my neuro: when I saw him I asked if he’d do this. He immediately agreed and even said that my back had improved because vitD was known to strengthen muscles. (Why, I wondered, had he not said this the previous year?). In his letter to the GP, he said that ‘a daily dose of 5,000iu is appropriate for MS’. In other words, the research and knowledge into vitD and MS had developed apace. My GP says she has no idea why it works!


tiggermum
3 years ago

Happy belated birthday @northernlass. Today is my birthday – and I am 58. I have been struggling with a very heavy cold the last week, preceded by a cold week with no heating, thanks to an episode with our boiler. So, today I am celebrating being warm, fed and alive.

All my other stresses and issues can wait until tomorrow. 🙂


northernlass
3 years ago

Happy Birthday @tiggermum I like the idea of celebrating being “warm fed and alive” very valid reasons to crack open a bottle of bubbles… 🙂 as for stresses and issues waiting until tomorrow .. too right.. got to have one day off from stresses and issues.. my birthday was thankfully snuggled in between two bank holidays and a weekend so the whole of the UK was in holiday mode anyway… 🙂 And wow @cameron that sounds like a horrible pain full journey that you have been on… and for so long too 🙁 I have a few similar issues with my lovely and efficient GP also saying I didn’t need a blood test to check my Vit D and B12 and then both came back low… (Proved right) and then I asked the MS nurse to arrange a blood test as been taking 5,000iu of supplements daily for 8 months so wanted to see how good I had been doing… GP read results and was surprised I had gone down with Vit D and prescribed 3,500iu of supplements (Why so low I don’t know but will do 3 months of those and see if it improves.. :-/ ) And fingers crossed the Vit D supplements continue to ease your back pain.. Best wishes.


tabbycat
3 years ago

Happy belated birthday! There is a lot to celebrate in still being here, but I know what you mean about spoiling the date.
I refused to believe my first diagnosis and insisted on a second, which was the same as the first – on Valentine’s day – And is hard not to remember the day for lovers as the day I got the worse news in my life !
So – on wards and upwards as there is no where else to go!!!!
Look forward to another year on the roller coaster and try to do some yelling with your hands in the air!
Best wishes x

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