Diagnosed over 50

New diagnosis and before diagnosis
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Hi

i last posted here about 3 years ago when I had experienced my second episode of tingling and numbness. I eventually had an MRI which revealed 2 overlapping lesions - these were attributed to a one off episode (or two X one off episodes).

I now have a collection of new and much worse symptoms, have seen a neurologist and am waiting for another MRI and lumbar puncture. The neurologist is fairly certain this will lead to a diagnosis of MS.

I am feeling pretty overwhelmed at the moment. I’ve been trying to read as much as I can and have found that all the literature talks about being diagnosed when you are in your twenties or thirties. I am in my early fifties, single, children reaching independence and really worried for the future.

I am usually a very upbeat outgoing person, have lots of friends and am always out doing something. Over recent months I have become a recluse and feel I have lost a part of myself. I don’t really know how to fight back.

i have a full time demanding job (which I love) but it has become all consuming at the moment as I am so tired and finding it really difficult to keep going with all these worrying symptoms to deal with.

Im not really sure what I am looking for here? I guess it would be good to know if anyone else has been diagnosed at this age and what your experience has been since diagnosis.

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hi sharrona

i was diagnosed the week before my 50 in 2008.

i understand what you mean about feeling that you’ve lost part of yourself.

i caught sight of myself in a shop window with my new walking stick. - shocking!

then the next day i got angry with my reflection in the bathroom mirror, bloody imposter!

so i had my hair dyed bright pink, if i don’t recognise me, why should anyone else.

i really loved having pink hair and haven’t been my natural blonde since.

i’m now violet.

now you can still be your upbeat, out-going self, in fact it is helpful if you have ms.

the worse thing for me was becoming incontinent, my last shred of dignity gone.

however the bladder and bowel clinic plus tena lady have worked wonders for me, if you have the same problem i urge you to see them. the nurse is lovely and even said that a lot of people my age, without ms, have the same problem.

you MUST keep seeing your friends, mine have been brilliant.

have you spoken to your gp about how you are feeling?

anti-depressants are probably alien to you as they were to me but my gp prescribed citalopram which was great when i needed it. i came off it a couple of years ago.

so life goes on and it has to be a happy life otherwise what’s the point?

you have brought children up and have a good job so that means that you are strong.

you can do this!

carole x

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Thank you for your inspiring reply Carole. I know I need to regain my positive attitude but just can’t seem to do it at the moment. My life consists of work, eat, sleep, repeat and weekends are spent catching up on everything else (and napping) - I just don’t have the time or energy to socialise.

I’m hoping when this relapse passes I’ll have more energy again. I’d like to have some time off work or reduce my hours but there is only me to pay the mortgage and the bills so it’s not really an option.

I haven’t spoken to my GP, in fact I have lost all faith in the doctors at my surgery. I have been unwell on and off for 6 years and they have mostly dismissed my symptoms as psychosomatic/menopause/my age. Maybe I should try again?

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hi sharrona

it is a massive thing to get your head around.

tell your gp that you are struggling with waiting for your diagnosis.

it is a chronic, long-term condition and if your gp dismisses you again, find another doctor.

if he/she had treated you with kindness from the start you wouldn’t be feeling so low.

find out which benefits you are entitled to.

good luck

carole x

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Hi Sharrona,

I was 50 in June this year & started DMD’s (tecdifera) in October last year, although I have been diagnosed for 11 years now.

Since my last relapse (April 2015) I decided I wanted to ‘try’ to be in control and pushed for a vitamin d test which came back as extremely deficient. I started the mega dose prescribed by my gp and then once my levels reached the required level I was taken off them. I now purchase vitamin d online & take it daily along with a few other vitamins. Once I saw my neurologist we discussed the options and I chose tecfidera (although I was worried about all the side effect) but I needn’t have been as now 12 months in I only occasionally get a flush. With Christmas was out of the way, I decided my diet was the next to undergo a change - I was ready to make this next, but daunting positive step towards slowing down the progression. I follow the OMS eating plan and my husband has joined in too!

Finding out you have a Neurological disease without a cure is life changing and it took me 11 years to be ready to take it on. I feel energised now that I have taken these positive steps to slow down the progression of this awful disease, taking one day at a time.

Good luck

Sharon x

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Thank you both.

Im going to try and see my GP this week if I can. Maybe even try and get a sick note for a week or two while I’m feeling so all over the place.

I already take vitamin d as I tested quite low earlier in the year. I also have Hashimoto’s Thyroiditis and I suspect my thyroid levels are all over the place too!

Youve both given me a bit bit of hope so thank you. Right now it feels a bit like my life is over!

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I also have an underactive thyroid, diagnosed 8 years before my ms diagnosis. Despite all my other issues my thyroid levels have remained steady throughout. I take 125mg of thyronine daily. Are you still taking vit d and if so how much daily. I’m taking 5000iu per day. It took ages to get my levels right. Hope you get what you need from your GP. Sharon xxx

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Hi Sharon

My diagnosis was just before my 71st birthday - no-one of my age gets MS (the “experts” say).

The first thing to get your head round is that we are all different.
If you get symptom A, it does not mean that everyone (or anyone else) will get it.
If someone gets symptom B, this does not mean that you will get it.
However, some symptoms are more common than others, and there is likely to be someone here to offer advice.

Like Carole has said, maybe you need a new GP/surgery.
A friend had extreme back pain, and another non-GP professional recommended an MRI Scan.
Her GP suggested Aspirin.
She changed surgeries and the first thing they did was refer her for a scan.
Being the NHS things moved slowly, but she is now some months out of spinal surgery.
The outcome might have been better if the scan had been done that first time.

Please don’t be put off by GPs who do not seem to care.

Geoff

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Thank you kind people!

My Hashimoto’s was diagnosed 11 years ago and was well controlled by levothyroxine for about 8 years but I’ve been struggling the last few years. I eventually went to a functional medicine doctor and am now on erfa thyroid which made huge difference.

Im so full of aches and pains and exhaustion at the moment, can’t tell whether it’s all from the possible MS or I could also be hypothyroid.

I am taking 2000iu Vitamin D daily - perhaps I should be taking more?

Ive been so busy at work this week that I haven’t found time to phone my GP yet!

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Thank you Geoff, that’s really helpful advice.

My previous GP has just retired and the last one I saw at the surgery was much better so I’m going to try and see her again. The only trouble is that everyone seems to prefer her and it’s hard to get an appointment!

I think this waiting time is really difficult. My MRI is on 1st December and I just want to get on with it now!

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Hi Sharrona

Im waiting MRI results at the moment but like you was diagnosed 11 years ago with thyroiditis which became full hypothyroid. I gave up on levothyroxine many years ago and now take Thyroid S which works wonders.

When I began getting pins and needles, stiff, weak legs, dizziness and extreme fatigue at the beginning of summer I too wondered if it was my thyroid but when I visited my GP (who is supportive of my not using levo) she immediately referred me to neurology and ruled out a thyroid issue.

Would getting your bloods done to check your T3 and T4 levels be an option? At least you’d know whether your thyroid was to blame or not.

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Hi BeGrBe

​Thanks so much for your reply. I’m on a couple of Facebook groups for thyroid issues but haven’t come across anyone there who also has MS (even though they are quite often found together).

Unfortunately my Surgery will only test TSH. I have tested T3 and T4 privately in order to monitor my levels but haven’t for a while.

Both my GP and neurologist feel my current problems are neurological rather than thyroid related but I am so achey, cold and tired along with the numbness, tingling and balance issues, that I wonder if my thyroid levels are off too. Time to get another blood test I think!

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I know I have days, especially when floored by fatigue that I wonder is this thyroid or not. Or even a double dose of exhaustion to deal with!! I sometimes get so tired that it makes me feel physically sick if I’m unable to immediately stop and close my eyes.

I too am on the FB groups but despite both conditions being auto immune I also haven’t found anyone with both.

I haven’t been diagnosed with MS but have seen a neuro, had an MRI and am in that awful waiting period. I still keep telling myself it’s just a trapped nerve or something simple despite all my symptoms suggesting MS.

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One of the hard things about this waiting game is that if it isn’t MS, then what the hell is it?! The symptoms are still there, we still have to live our lives.

My scan has been brought forward to tomorrow so at least I’m one step closer to knowing.

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Hi, I was diagnosed last year at 53. I posted same as you and turns out many more SAGA louts with late onset ms than you would think. It is an actual term called LOMS late onset ms. Once diagnosed ask to be considered for DMT or Desiese Modifying Treatment. I went onto Tecfidera in Jan of this year. Not a cure of course but is has been shown to cut down attacks by up to 50%. This site is brilliant and folks on hear will help and support you. All the best and try not to worry.

regards Trev

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Thank you so much for your reply Trev.

It has already been really good to read everyone’s responses …it has given me a bit of hope.

Right now I feel so low, exhausted and worried, it’s hard to imagine feeling any different!

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Feel free to pm me any time. It does get better I promise.

Trev

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Thank you Brakes …good advice.

Im still waiting for diagnosis. My symptoms are getting worse and I have taken this week off work. It’s not easy, this waiting game, is it?!

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HI I’m Polly and I`m 54 years old, I am at the start of trying to find a diagnosis of possible MS.I already have a family history of MS in my family on my maternal side of the family, my Grandfather.I suppose although yet undiagnosed I started whilst drinking a glass of whisky at Easter 2015, numbness to my upper palate.However I had just bitten the inside of my cheek quite severely, and although I initially thought that may be the cause, over the month as the cheek healed my numbness remained.I went to my GP who passed it off as such, but did tell me to make an appointment should my symptoms continue and end up tingling in my hands and legs, which they did.I kept having to stamp my foot down to see if it was ok plus fatigue didn’t (out of cowardice) as I suspected go back to my GP until a few weeks ago.I had not really had many more symptoms, yes fatigue and what I call a noddle head, but always coinsidered that this may be MS.So where I’m at now, booked in for blood tests; Urgent referral for Neurologist however not until the 4h October!!! and take it from there.Great to hear your experiences and I will keep you posted.

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Oh, I am sorry. I do truly share your fears. I weep alot.

I am 48. Newly diagnosed by a private neurologist but now in limbo why I wait for the NHS and more tests. Thought that my symptoms were all about later life stuff. I have a brilliant job which is highly stressful, but exciting and fulfilling, and I can’t do it. I am scared too. My teenagers are beginning to be independent but need me. Worrying times. I feel alone and don’t want to burden my family or friends too much and because the symptoms never abate, every minute of every day, I know that I have MS.

Because I am older, I neatly assume that I have a progressive type? But I will be patient here.

Things that have truly helped so far… (in no particular order)

This forum, ask anything. It is so helpful.

Telling my family. - i pretended to be at work for two weeks whilst they had exams!

Work have given me six sessions of counselling (never done that before),

and I bought a book called Overcoming Multiple Sclerosis - George Jenilek (free from the oms website) it has given me information and some control.

I think it (MS) will be a roller coaster. I think that it will significantly alter my life. I think that I am still grieving for the life that I imagined that I might have had, however, I have heard some really spirited, brilliant people on this forum, which means that things will be, just different.

I do send you the very warmest thoughts. Paitence x

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