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Help!

HI, I’m very newly diagnosed (RRMS), I’ve been battling the NHS for 8 years to get some sort of diagnosis and my symptoms were always blamed on my underactive thyroid and a vit D deficiency that doesn’t get any better! I used to be such a very strong person, and was hoping when I got a diagnosis, things would start looking up. But now it seems, the more research I do into MS, the more I am worrying about my future. It’s quite hard to talk to the people around me as I do tend to hide my symptoms. And I really don’t want this to define me. But it’s a struggle to put on a face everyday and pretend to still be the strong person I was, when I feel like I’m crumbling inside. So, I guess what I am asking, how did you handle your diagnosis? Any advice would be greatly appreciated :slight_smile: Leia

Hi Leia and welcome.

I was diagnosed nearly twenty years ago and was lucky to carry on working till redundancy/early retirement was just too tempting to turn down but otherwise I would still be there.

I would say stop reading so much about MS! It won’t help and will just worry you. Read on a reputable site, ie this one when there is something you need to know but till then ‘Keep Calm and Carry On’. I don’t really understand when people say they don’t want MS to define them… you have it, you will always have it, it won’t go away, it will always be something you have to take into account but you don’t have to let it rule your every waking moment. Yes, it might floor you at times and I think we have no control over when it does that but in meantime, enjoy the other times. Eat a healthy balanced diet, get some exercise when you can, get plenty of rest and don’t feel guilty about it. You have a good excuse to spoil yourself sometimes now!

You are probably a bit shocked just now at getting the diagnosis but things will calm down. I hope you can get that thyroid problem sorted soon as that is quite an easy one to fix.

Take care

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Hi Leia,

You’re going to be OK.

People see the person you are, not the illness you have.

Anthony

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Leia,

Welcome to the club; no doubt one you did not wish to join.

I was diagnosed when I was 62, only two years ago, but had experienced MS type symptoms since the 1990s. When the diagnosis finally arrived it was a great relief in many ways, as it helped put some of my life’s experiences into perspective.

I would recommend that you take a look at the following website and obtain the free book on MS. I has guidance about diet and exercising, aspects which are vital to manage your symptoms.

I have been following the Jelinek diet for over a year now with excellent results. My mind feels a lot sharper having given up dairy products. I was a vegetarian already so the progression to vegan was easy.

In addition, I would recommend that you consider taking CBD (cannabidiol) that is extracted from the cannabis plant. CBD is much in the news at the moment and it is perfectly legal. I use a paste that I obtain from CBD Brothers. I use it to manage neuropathic pain and stiffness in the limbs.

With the combination of diet, exercise and CBD, I am able to manage my symptoms without recourse to prescription medication. I do not necessarily advocate the avoidance of DMDs but there are always alternatives. For me it is important to keep my head as clear as possible so that I can still enjoy life.

I fully endorse what Val has said.

Best wishes,

Alun

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Hello Leia,

All of the above information is excellent. As Val said, try not to randomly Google MS, use the resources of a reputable website, such as this one or the MS Trust. Try https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-sclerosis as a first step. There is lots of help on there to guide you through the myriad of info that’s going to form part (only part mind you, chances are you will just carry on being exactly as and who you are despite the diagnosis) of your life.

I suggest you also think about a disease modifying drug (DMD). Your MS nurse, who I’m sure you’ll meet soon if not already, will help you through, but it’s worth looking at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid which details all the available DMDs. Their purpose is to reduce relapses and the severity of relapses. They all have potential side effects to balance out their likelihood of relapse reduction rate. So the idea is to think about how risky you are prepared to be in order to reduce relapses. You probably won’t get completely free choice, it will depend on how active your MS is, the prescribing centres set up in your area, your neurologists preference and of course your own preferred option. Have a look at the webpage to familiarise yourself with the various drugs, then talk it through with your nurse.

Given a decent DMD that suits you and your lifestyle, you will hopefully stay relapse free for years and years. You’ll perhaps have better health than you’ve had for the last years while you’ve waited to be finally diagnosed.

So try not to worry about your future. You’ll be better off than most of us who haunt this forum because you are younger and more DMDs are available to help reduce the effects of relapses. Honest. And if you have questions, thoughts, just want to pass the time with people who understand, then we (ie the MS community) are always here and ready to help if we can.

Sue

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I would stop trying to be ‘strong.’ There is nothing wrong with being depressed unless that depression I would stop trying to be ‘strong’ and just go with your emotions. You’re probably anxious about the future, feeling depressed, possibly angry. If those feelings are long lasting or affect your daily life for a long time then you need help. Looking back I don’t think I handled the m.s. but rather the m.s. handled me and after a period of time I think I reached a more even keel. (Beware of these often used clichés - acceptance/coming to terms with/ defined by etc they don’t mean much.)

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oops! meant to put nothing wrong with depression unless that depression is long-lasting.

hi leia

i booked a fortnight’s holiday in greece.

man i really knew i had ms then.

the weather was so very hot and the little town was so very hilly.

you know it’s hot when the greek waiter’s are panting for breath!

my husband’s response to any crisis is to drag me off to the pub!

trouble is that ms manages to spoil the night out.

but i love my life so i try not to let it ruin it.

carole x

Thank you all for your comments. It’s been a real struggle, the last year. I finally found a GP who listened to me and referred me to the Neuro. When I finally got my diagnosis, the neurologist apologised to me as she assumed that my symptoms were just down to stress and tiredness. I’m highly active during my working day, but when it comes to my days off, I spend the majority of the time in bed due to being so tired. I know I need to find a balance, luckily my daughter (Georgia, 5y/o) is amazing and she keeps me going. I have read a couple of threads about the heat exasperating people’s symptoms. But I really struggle when it’s cold. Spasms and muscle tightening mostly, but gets quite painful after a while. Due to my job, being in a cold area is quite often the norm. I wear a lot of layers, (I look like the Pillsbury Dough Boy) but not too many so I can still move quite freely! So I can’t win at the moment. I cope with it. But would DMD’S help with those sorts of symptoms? Many Thanks Again! Leia

hi leia

DMDs are a different beast to painkillers for symptom management.

they will probably make no difference at all in this respect.

why not try alternative therapies?

many people swear by reflexology.

i myself go for high dose oxygen therapy, where i sit with about 6 others in a decompression tank breathing pure oxygen through a mask.

temperature control is a bloody nuisance, our internal thermostats are wonky.

i hope you find something.

carole x

Leia,

I have some other items for you to ponder, having read your latest post.

For your muscle spasms you could consider taking a Magnesium supplement; any one will do and many are very cheap. If you can afford it, a magnesium body butter is useful to put on your legs or ankles. I find the cream offers some comfort and relief.

You state that you have Vitamin D deficiency and I presume you are taking a supplement to boost this? As you may know, Vitamin D is considered to be vital for MS and neurologists recommend that our blood should contain between 150 to 225 nmol/L of the vitamin. It may be worth discussing this with your GP to ensure you are taking enough of it.

Take a look at the OMS, that I suggested previously, website where there is lots of information about supplements and their uses.

You may not yet think it appropriate, but your employer has a duty under employment legislation to make ‘reasonable adjustments’ at your place of work if your symptoms are affecting your ability to perform your tasks. You mention working in a cold area. If you are taking complete days to recover from your time at work, you may need to think about this. You could talk to your union and most employers have access to an Occupational Health department to offer recommendations to employers. I am not preaching but just running the notion by you to think about; the time may not be right yet for you.

I cannot advise you over DMDs as I have not taken any; they are not usually offered to people with PPMS.

Best wishes

Alun

Hi Leia

As I said in my earlier post, DMDs are designed to reduce the number and severity of relapses. So while they may help in the long term, they won’t help with everyday symptoms.

You mention several symptoms that you could get medicinal help for, if you find that the type of more natural relief as suggested by Alun aren’t either effective or useable for you. Firstly, there are a couple of drugs for MS fatigue. The best of these is Modafinil, although it’s become quite difficult to get a prescription for this as it’s only prescribed ‘off label’ (this means it’s licensed for a different purpose, in this case narcolepsy), but if you can persuade your neurologist to prescribe it, it could be worth trying. The other drug for fatigue is called Amantadine. Much easier to get prescribed, it does help a lot of people with their MS fatigue.

Failing drug therapies for fatigue, or as well as drug therapies, have a look at https://www.mstrust.org.uk/a-z/fatigue There are ways to manage your energy levels to reduce fatigue. It’s known as ‘fatigue management’.

Plus, make sure you have your thyroid levels checked regularly. An under active thyroid can itself add to your fatigue level.

Then there’s your extreme reaction to cold, spasms and spasticity plus the pain that goes with these are often massively helped by magnesium as Alun said. There’s different formulations of magnesium. I find that magnesium glycinate is the best one for me. Magnesium citrate can impact on the bowels, causing diarrhoea. Otherwise, people use magnesium cream and /or spray can help. There are also drugs which help with spasms, most commonly a drug called Baclofen, although is doesn’t suit everyone as it loosens up the muscles, so can make your legs weaker.

But if it’s the cold in your place of work which is the major factor in your spasms, then I assume the cold is necessary for your job? If that’s the case, can your employer not provide suitable protective clothing so you’re not dressing to climb Everest just to go to work? If the cold isn’t a primary feature of the work you do, then can your employer be persuaded to warm the environment up?

Or think about changing job? Is that a possibility?

Do make sure you are taking sufficient Vitamin D. Most people with MS are advised to take a high dose. An overdosage is dangerous, so keep having your level checked, but I personally take 5000 iu per day and my levels are fine. This could be higher than your GP is prescribing you, but talk to the GP about upping the dosage.

Good luck with all this.

Sue

Thank you for all this information! My Vit D levels are currently at 17, the doctor said this was classed as servere. Last year they were 21 so it’s got worse. They’ve put me on a dose of 20,000 units a week. It’s made me feel a little better. He also said my Haemoglobin was low so I’m on quite an iron rich diet, (a lot of green veggies). I’m actually a merchandiser, working for Tesco, and have just come off of a week of night shifts. We’ve been working on a range reset on the dairy department, (all open chillers) by the time I had finished in the mornings, i was in agony. Im going to speak to my manager on Tuesday to see if there is anything they can do in regards to uniform to help me out. Luckily they have been very supportive in all of this! And I will also give the magnesium a try too. I’m willing to try anything at the moment! Leia x

hi leia i’m very glad that others have given more practical advice. excellent that you are going to try magnesium. the spray or cream are excellent as we absorb more if it’s given trans-dermally. also if you can up your vitamin D you should see a great improvement. i’ve even managed to get my husband taking it (he views supplements as a load of baloney). please let us know how you get on. carole x