Last reply 1 year ago
First relapse and diagnosis, worried.

Dear all,

I am a male 33 old year old.

3 months ago; unaware of what was about to happen,one day I felt off balance and within a week was hospitalised.

The balance issues were accompanied with nystagmus causing double vision. I also had Horrible vertigo and vomiting even when drinking water.

Of course, I was massively frightened. I didn’t know what was going on. I was thinking worse cast scenarios.

After seeing several doctors over the cause of my hospital stay, I had a MRI scan that showed multiple lesions and an active one in the spot causing all the current symptoms.

I had very little knowledge of what MS even was , let alone realise I was about to be told I had it.

3 days of steriods, and now 10 weeks later, I have made huge improvements which is great. I feel almost “normal” and have really worked hard to help myself.

I had to almost learn to walk again, and have been doing physio but still wouldn’t say I walk normally. It’s really affecting my confidence as I’m super self conscious.

I lost my job in finance (contracting) which may or may not turn out to be a good thing in the long run. But does bring stress associated with the various considerations going forward.

It took 6 weeks for the vision to normalise, I couldn’t be in noisey places and was affected by lights for ages too. This has gradually improved too.

I can now walk while moving my head and looking around. But still veer towards the left if not fully focused.

I find that I’m still not fully confident in going out as I get overwhelmed by the multiple stimuli. It’s getting better but taking its time.

I have started treatment already (1st tysabri infusion 2 weeks ago) and believe I’m lucky in some sense to have been so quickly diagnosed.

Yet I’m also super scared that it came about so abruptly. Has anyone else experienced such a sudden diagnosis? Does it mean that things are going to get bad super quickly?

The one MRI scan showed around 10 lesions and even black holes. So the one MRI showing lesions from different points of time.

My MS nurse seems super optimistic about my treatment and I try to trust her experience.

Yet I’m just truly puzzled by what’s happened the last 3 months. Feel at times like I’ve lost so much of my independence and scared of a limited future.

I’m sorry for negativity as I know it can and likely will get worse. And I should be grateful for the improvements.

I feel maybe I had hopes to get a full remission, I wonder if it still could be possible. My neuro said that my balance might not be perfect again, but I’m trying to train to allow otherwise

Finally, I’m doing what I can to help things. Ive stopped smoking, eating healthier and being active daily.

The one thing of course I’m not managing very well. Is my stress, I feel stressed by the diagnosis, and uncertainty. I’m trying take each day at a time.

I appreciate any feedback on your experiences

Cheers

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stumbler
1 year ago

Hi @londonlad and welcome.

Yes, a quick diagnosis is one option that some of our members have experienced. It can just make the shock of the diagnosis even worse.

And, yes, no-one seems to know about MS, until they have to know about it. It’s still a taboo subject.

It does take time to fully come to terms with the diagnosis, so give yourself time and go easy on yourself. Stress is a major antagoniser of MS and really needs to be avoided. The diagnosis does bring our future more into focus, but we’re not alone in having an uncertain future. Everybody’s future is uncertain, until it arrives.

You’ve just been given the opportunity to re-assess your life now and make some beneficial changes.

Feel free to ask any questions that come to mind.


molineux1047
1 year ago

@londonlad I suffered almost identically last June…vertigo, sickness, hospital, walking, vision, too much stimuli meaning it was hard to get out. I had about 6 active lesions on my brain but as they checked it showed older damage. You could almost have written my story for me. Im hoping to start treatment soon. Im sure you can get totally better doing all the things youre doing but I know you just have to take each day at a time. Ive been almost back to normal but get other random symptoms appearing. I think once youve got a diagnosis your senses become heightened to any small change in how you feel though!


potter
1 year ago

You are young and can rebound better than someone my age (64) I was 55 when I was diagnosed. They have dozens of research trials going on at one time search for a cure. New drugs coming out all of the time. Two of my aunts had MS before there was any treatment. One of them ended up in a assisted living home by her early thirties. The future is a whole lot brighter for MSers than it use to be. Do your research and find out what works for you. I have a son your age when I was diagnosed it upset me that he could be diagnosed in the future because of genetic disposition. I am no longer worried about it because of all the new treatment programs and research. Have you had your vitamin D level checked, I have to take 4,000 mg to keep mine at a normal level. I take a good probiotic everyday and a long list of vitamins ect. I try to eat fresh pineapple every day and fresh blueberries when they are in season. Fresh pineapple reduces the inflammation in your body, frozen pineapple juice will also work. I went to a physical therapist when I was first diagnosed and she gave my a regimen of stretch exercises to do. I am still walking, not as long as I would like but still walking. If you have any question someone will try to help or if you just want to rant and rave we may join you. You are fighting a war with MS. Potter


londonlad
1 year ago

Thanks @ Stumbler
I do agree, in some ways I’ve been given a catalyst to make changes I’ve been failing to achieve for a long time. Such as quitting smoking and eating better. These have felt almost easy under the current circumstances. I appreciate your response

@molineux1047
Thank you for sharing your experience with me. It’s does sound like we had very similar introductions. Did you have any other experiences or was this similar to me in that you had no idea until then?
How long did the recovery take to get over the symptoms? Did you find it difficult to lay flat for a while? Laying my head seems to still aggravate me. But it’s improving still.
I hope your treatment starts soon and goes well for you. Do you know what you’ll be taking?


molineux1047
1 year ago

@londonlad I had double vision when I was about 27 – Im 40 now – and it was found my right eye was partially paralysed but it got better after a few months. I had no other idea until June last year. It took me about 6 months to get properly better to be honest but then i felt sick agsin in February and i was diagnosed in April when they found lesions on a mri. I struggled lying down and sitting but eventually it was only sitting and standing that made me sick. The room never actually spun with my ‘vertigo’ though.
Ive been told I can choose my DMT – two neurologists have tried to tell me to have a very low level treatment to start but all of the advice Ive had here and elsewhere has said to go for a more aggressive treatment. Im steering towards Lemtrada but its a hard decision. Ill just be glad to get started to be honest 🙂


londonlad
1 year ago

Thanks @potter
I appreciate you sharing your experiences and giving me advice.

I am taking 5000IU of Vit D at the moment and they said they will monitor and adjust if needed.

It’s encouraging to hear how you’ve been able to keep active and hear about aspects of your diet.

I’ve been going towards a mediterranean diet, eating lots of vegetables, some fish etc and fruits too. I’ve been having blueberries but I wasn’t aware the benifits of pinapple. I’ll be adding it to my shopping list. Thank you

I’m opptamistic that age , early diagnosis and treatment can all help. I feel the freshness and shock, and with such sudden symptoms has me a little scared that it might progress super quickly, even though many people including my ms nurse are saying is unlikely to happen.

I do appreciate your response and hope to win this war with you all.


londonlad
1 year ago

@molineux1047

It sounds like I should still continue to have hope given it takes time to fully recover. Ill continue to do my part, and hope that helps the outcome.

With regards to treatment; I was offered options too. Tysabri or Lemtrada were their recommended options as I was also told the neuro prefers to start with the front line “aggressive” treatment.

I researched both the treatments both quite a lot before making my decision. I was quite off put by Tysabri at first by the PML risk, but felt id wait for my JC virus result before making a decision. That result was negative.

There seem to be other negatives and positives of both. But both sound to be effective at lowering relapse rates which is very very welcome of course.

I wish you the best with your decision and treatment.


stumbler
1 year ago

@londonlad , all the Disease Modifying Treatments (DMTs) come with risks. But these are known risks, which will be mitigated by monitoring.

It’s very similar to crossing a road, that comes with serious risks. But if we monitor the traffic, we manage the risk. 😉

@londonlad since you are jcv negative I think Tysabri seems like its a very effective drug and probably a really good chance its going to knock the diease way down. Stopping smoking is also a really good step. I would recommend you look at some general lifestyle programs, we follow OMS in our family (overcomingms.org) in addition to this site.

Regarding your stress, there are things you can do to eliminate stress and there are things that are just not going to go away. However from the research I have done, it seems it more how you process stress thats the important thing. Even if there are stressful events you can change your relationship to stress. A good mindfulness program is very effective in helping you make those changes. The data shows it really helps manage inflamation. The practice of guided imaginary and breathing will force your brain to send different signals regardless of how stressed you are. So while there are practice things you can do to remove extra stress, you are likely always going to have some and working on managing stress is a skill that can be developed.


Anonymous
1 year ago

Hey @londonlad

Sorry to hear about your diagnosis, it is a super scary time. But I felt better being able to come on here and ask questions to people who had been through the same thing. I have been diagnosed for two years today!

I didn’t start treatment till a year later, my choice maybe a mistake. But anyway I have been on Tysabri for a year now, I am JC positive – but don’t really worry about side effects. The effects of MS are worse.

It can take up to a year to recover from a relapse so sounds like you are doing really well. Just give yourself time, find your happy place that will help you de-stress. It really is the worst thing for MS.

If you have any questions about Tysabri or anything just let me know.

Avril x


tracyd
1 year ago

@londonlad
Welcome to the most positive place on ‘tinterwebs for people with MS.

My diagnosis like yours was out of the blue, I’ve copied and pasted the next bit from my blog …

On a Monday at the start of September 2014, something went pop in my head and one minute I was fine the next I felt like a chronic migraine that had appeared out of nowhere in just 45 seconds. By Thursday I’d had enough, nothing worked to lessen it (except wine). I saw my doctor and was told it needed to be monitored, if it got worse to come back. On Friday I nearly passed out in the supermarket and was told to go to the out of hour’s service at Basingstoke hospital. I was immediately admitted; they thought I might be having a brain haemorrhage.

Fast forward three days, a lumbar puncture and a CT scan. They had ruled out a Brain Haemorrhage, they were also pretty keen to rule out my having had a Stroke, and YAY it’s not a Brain Tumour either. But there were ‘shadows’ in my brain that looked a lot like MS – oh and do you know it looks a lot like you’ve had Viral Meningitis Mrs D (apparently this is not the nasty Bacterial one – Viral Meningitis is a bit like nasty Flu).

A few MRI’s, another lumbar puncture, 3 days of a steroid drip to reduce the golf ball sized inflammation in my brain and hey presto you have a diagnosis of Relapsing Remitting Multiple Sclerosis. To be honest, it was a relief although apparently when they give you the diagnosis ‘well that’s alright then’ is not the expected response …….. :-), all the other things had ‘fatal’ options on them and MS really was ‘The Bright Side’

In regard to the stress, it’s a personal journey that is different for each and every one of us. You have more than MS in your rearview stress mirror and as with dealing with everything in life, when stressed everything is worse. In regard to the MS you’re doing everything right, you’ve grabbed the (MS) bull by the horns and taken the fight up against progression.

You’re managing the MS problem in the most effective way that works for you. I hope you can find a way to celerate that you are kicking MS squarely in the balls with each infusion, that’s it’s YOUR immune system and if it won’t obey on it’s own you are forcing it to do your bidding regardless. <3

The balance, the cognative distortion, is something I experienced a lot in the time after diagnosis and is debilitating and disorientating. For me I was able to help this hugely by going and having Oxygen Therapy at my local MS Therapy Centre in Reading, there are quite a few in the London area, so it might be worth going and giving that a try, for me I would walk out after an hour breathing oxygen at pressure and it was like the my head had been spring cleaned, I was me again, I could concentrate, remember stuff and not open my mouth and sound like an idiot – it was a temporary fix, but by going regularly I could keep the cobwebs away and be ‘me’

There are 4 centres described as being within 20 miles of the W1 post code on the link below which might be an option for you.

http://www.msntc.org.uk/find-a-centre/?postcode=w1

The job and the worries that go with that, well there are some ‘bright sides’ to be had, if you have critical illness cover then the diagnosis should trigger that paying out in full if you contact them. You’re not obliged to tell potential employers about the MS so that can’t be held against you as a potential employee.

You’re still you …… please remember that and if you need somone to talk things through with, have a good rant at or just put the world to rights with, you have a friend request and I’m happy to share contact details by PM xxxx


londonlad
1 year ago

@avrilt
Thank you for sharing your experience.
I hope all is going well for you and I will certainly reach out to you.
Thank you

@tracyd
Thank you so much.
I feel that I’ve only just got back to actually feeling like me. I was so focused on physical recovery until the last few weeks that until that improved .. then all of a sudden… had to deal with the what’s just happened !??! What’s going to happen.. and was kind of overwhelmed.

But I’m feeling more positive with time, and this site and everyone’s experience already is making a positive difference to my thinking.

I’m hitting the gym , eating clean, and with the meds, like you say. Hope this will start to help slow my bodies civil war with itself.

I’m open to alternative therapies so thank you for sharing the oxygen information.
Did your balance eventually improve anyway for you after time ?
Take care


tracyd
1 year ago

@londonlad
Oxygen therapy is offered at almost all the MS Therapy Centres nationally it’s not so much alternative as it’s part of the physical therapy regime 😎
My balance now is just as rubbish as it always was before MS I have my physio assessments somewhere on my work computer I think if you want me to send them to you drop me an email address by PM and I will send them across to you

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