Last reply 2 months ago
It looks like I have MS

Hi All,
I have just joined this site and am finding it very useful.
In Dec I thought I had a trapped nerve in my right arm as my hand had pins and needles and I went for physio. Later in the week my left side of my lips and tongue had pins and needs. I visited My GP and he send me straight to the hospital for get a CT Scan and MRI. Everything moved so quickly and within 48 hours the doctor gave me steroids for active lesions. A week later I went to see a neurologist who said I active lesions and it looks like I have signs of MS. Tomorrow – 14th Jan I have a lumber puncture to fully confirm. I am really scared and I want to know when you get diagnosed do you start treatment straight away. Google searches is making me really uneasy.

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stumbler
2 months ago

Hi @radhica_kakaria .

Dr Google is never a good place to start. Stick with trusted websites like the MS Trust and MS Society.

Things have really moved quick for you. And the thought of considering Disease Modifying Therapies (DMTs) at the end of this whirlwind is understandably daunting. These are powerful drugs, which all come with risks. However, these risks are predictable and you will be closely monitored to mitigate these risks.

This is unlike MS, which if left to its own devices, poses an unpredictable risk of further, possibly disabling, damage to you.

It’s a tough situation, but knowledge is power. So, have a scan the publications available on this website :-

https://support.mstrust.org.uk/shop

particularly under the “Newly Diagnosed” and “Treatments” tags.

And, post any question you may have.


radhica_kakaria
2 months ago

Thank you for messaging,
I’ll have a look at the tags, and the site. I think just getting my head around it all is hard.


lukezni
2 months ago

@radhica_kakaria hello, after I was diagnosed I started treatment 10 months later


blagaman182
2 months ago

I don’t think you need to rush straight away in DMD’s. The sooner the better but a couple of weeks in my opinion just to get your head around it is probably good. Just remember to stay off google. Also take what other people say to you with a pinch of salt… you’ll always get ‘my aunt died of that’ etc.. which can be scary to hear but is probably not 100% the whole picture. In this day and age we have so much more medication and a better knowledge of it.


mgriffiths5
2 months ago

@radhica_kakaria it is very understandable that you are feeling anxious and overwhelmed. I too found the adjustment difficult.

Alongside that, it is important to know that there has never been a better time to be newly diagnosed with MS. The new generation of Disease Modifying Treatments means that you now have every chance of leading a near-normal life.


soph93
2 months ago

I was diagnosed for sure in December after a lumbar puncture. Supposed to be starting treatment this month. It’s a scary time but getting to the bottom of what causes the issue is a big start.


laura-forde
2 months ago

After I was diagnosed my neurologist advised me to go away and look at the treatment opinions on offer ( I choose Tecfidera) for a few weeks. At first I thought no, I want to start right away, but I realised I will probably be on this drug for the rest of my life. If not something stronger and a cocktail of drugs possibly. It’s an awful lot to get your head around. Google isn’t good for MS, it’s a specialist disease and things have changed so much in the last 10 years and are constantly evolving. That’s why I value Shift MS you get it from the horses mouth. I started taking Tec in July and it’s still improving my health. Good luck.🌻 Oh my relapse ( I think) was brought on by a long period of work related stress and a double bout of flu.


amulyab
2 months ago

@radhica_kakaria firstly, so sorry to hear about your initial diagnosis. Like @stumbler has suggested, steer clear of Google and stick to MS trust and MS society for any information you seek. Google will just add more stress to the already stressful time!
I got diagnosed with remitting relapsing MS in November 2019 after my very first episode in Sept-Oct. I had my first MRI scan in Oct last year and a second one last week. My neurologist said he wanted to see how active my MS was and that would help in choosing the right treatment. In the mean time, I have been given some treatment options by the specialist MS nurse to think of to make a decision by next month.
Good luck for the lumbar puncture tomorrow..it’s a very weird but quick procedure. Try and listen or watch something to distract yourself while they do it!
It was all very daunting in the beginning as I hadn’t even heard of MS till it happened to me! Stay strong your not alone! 🙂


dominics
2 months ago

Firstly, avoid Dr Google.

Secondly. I appreciate it freaks you out. An entirely natural reaction. You’ll find plenty of support here.

Finally, it is not curtains. I am 50, have had it 26y, on my fourth DMT and still manage to walk about 60-100 miles a month. In the last 7 years I have completed 2 degrees and am applying for a PhD.

I am not special: there are many people like me. The world hasn’t stopped turning. You will get much so-called advice and help from people you find are feeding from your unhappiness – again, an understandable and very valid thing to have – and what you may find is that their input is actually only valid dated if they can get you to do what they say.

You may find it useful to check out the YouTube channel of D Aaron Boster. He covers a huge amounts of what the disease means for patients. Non-technical. For more technical but not über-geeky Google the Barts MS blog.

You are very fortunate regarding the current treatment landscape. Things have changed much in the last 10y regarding treatment options and attitudes.

Why be treated? The evidence is very strange Ng regarding the benefits of early and effective intervention. It is about treating you with the intention of affecting the longer term effects of the disease. Delaying the onset of damage and mitigating the severity of it. Definitely topics to talk to your Neurologist and not get from randommers online.

Good luck. The world has not ended!


watsoncraig
2 months ago

Hi and welcome
As others have said stay away from Dr Google as According to that I am dead.


radhica_kakaria
2 months ago

Hi Everyone,

Thank you so much for replying, it really has made me feel a lot better knowing I’m not alone. Thank you all for your suggestions on reading material and advise.

I had the lumber puncture today, I feel ok. Will have to wait to see the neurologist next week.
Thanks

Radhica


londonlad
2 months ago

hi @radhica_kakaria

when diagnosed, I was quite ignorant about what MS really is, and had a perceived understanding (with no real knowledge), which meant it was easy for my imagination to go wild and think of the worst and outcomes based on very little.

its completely normal to feel scared and unsure about things. I’ve heard people can go through the same stages of grief (denial, anger, bargaining, depression, acceptance) when having a significant medical diagnosis. I certainly went through some of these but its not to say you will, or its in any particular order. but things take time to settle emotionally

just focus on resting, and its great you are making effort to learn from sites like this. and as others say, avoid, overwhelming yourself with google search’s and stick to the more reputable sites, including the MS society.

you can read some of my posts from around 2.5 years ago, as was asking similar questions. my MS came on very, quickly too, and led to a swift diagnosis. Getting onto a medicine quickly is a fortunate consequence of a quick turnaround. i feel for those who went years without a firm diagnosis.

I started treatment around 2/3 months from the beginning of everything kicking off. I don’t think you should feel rushed into treatment, as its better to be informed about things. it feels a unique medical condition, in that you have a big (and ultimately, the final) say in the medication you can take.

the only advice i would give as there are several, effective medications, as well as their levels of effectiveness/ or side effects, lifestyle is an important factors in what treatment you choice. meaning, some may require you to go to hospital monthly versus every 6, or even once a year. having a career, desire to travel, starting a family are all possible, but certain medications have more burdens than others,

feel free to ask anything else, and take care

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