Last reply 3 weeks ago
Two issues – any advice?

Hi

I have two issues that I’d appreciate some advice on. I’ll give you some background first…

I was diagnosed in April 18 following a bout of ON in March. I made a complete recovery from this. Then shortly after diagnosis I had some numbness in my legs which caused me to walk with limp for few days, but it went away and feel like a made a complete recovery. I stated Tecfidera in June. Everything on the ms front has been rather quiet and I’ve been going about my business as I did before i was diagnosed – working, playing golf, and family life all as before.

Issue one – this week my left leg has gone numb, not totally, I can walk ok, and its not getting any worse. Does this count as a relapse or it is a flare up of a previous symptom? I’m keen to know the answer as I would definitely want to move on to ocrevus if this was a genuine relapse.

My second issue is slightly more complicated. Following diagnosis I felt I was coping rather well with this bomb shell. After the initial few weeks of self pity and despair I went back to my normal life. However, recently I’ve become increasingly anxious. The sort of anxiety I would normally only feel when I was about to go into a job interview or something similar – you get the idea. But this feeling is with me all the time now and its stopping me from doing normal things. For example, being in a car I now find horrendous. I’m not sure why, perhaps the claustrophobia or the movement but I hate it. It’s like the stress of diagnosis has , 7 months down the line, manifested itself into this unrational fear. Has anyone experienced anything similar to this and if so how did you deal with it?

I’ve emailed my ms team but I imagine it will be after the weekend that I get a response.

It’s a bit of a long post, but writing it all down has actually made me feel a bit better.

Dave

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


highlander
4 weeks ago

Hi @daveo
Welcome to the club..
We all have a pretty good idea of how You’re feeling.
Once you start to have a better understanding of how all these things can make you feel , you can learn to manage how to work with it.
It just takes a bit of time.
Don’t stress it really doesn’t help one bit.
Easier said than done, but it is what it is as my wife keeps telling me!
The guru or yoda will no doubt be along soon no doubt he’s called @stumbler
I’m sure the other enlightened members will be along to say hi soon.
Keep smiling
Again welcome


d1zzy
4 weeks ago

Hi @daveo,
Sorry to hear that you’re feeling so anxious- I know that that in itself is enough to stop us in our tracks before we even start on the varied range of ms symptoms! It sounds like you’ve hit a bit of a reality check and although you’ve been coping so well, it’s really daunting to realise how quickly new symptoms, relapses or flare ups can suddenly appear. I know we’re all different, but when I start to feel anxious I try to go back to the basics and remind myself that I am still the same person and that there are lots of things that I can still manage and take control over. Breathing exercises help to calm the panicky feelings- I was sceptical about that, but they do work. I got some apps for my phone that help to get a focus back. I have also learnt that the panic makes my walking worse, so it can all become a vicious circle.

Hope this helps and that you hear from your team soon.

Good luck,
D1zzy


stumbler
4 weeks ago

@daveo , on issue one, it does sound like one of your original symptoms that are playing up again. This may be your body letting you know that it’s not happy with you. You may have overdone it, got stressed or eaten something that your body now can’t tolerate like it used to.

So, it’s the weekend. Get your feet up and do some chillaxing and see if things improve.

There’s some useful information about relapses here, https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses .

Your second issue isn’t complicated at all. You’re still coming to terms with your diagnosis and this involves a rollercoaster ride of emotions. It is suggested that you will go through several emotional phases :-

1. Shock and Denial
2. Pain and Guilt
3. Anger and Bargaining
4. Depression, reflection, loneliness
5. The upward turn
6. Reconstruction and working through
7. Acceptance and hope

And, it’s not a direct ride either, you can double-back and revisit phases. However, it can take a year or more to get to the destination of acceptance.

So, go easy on yourself. You’re still learning about the new you


bernadette
4 weeks ago

personally i’ve been advised before that if it is a new symptom that counts as a relapse but deffo i would contact your neuro nurse or Doc for confirmation. Seek advice and support especially as you are new to all this.
As for anxiety, it is absolutely a horrible feeling, early on i struggled with it within 3 months of my ON ( my first symptom too ) Its not an irrational fear by the way, it makes perfect sense to be worried.
Drs prescribed me Propanalol (beta Blocker) which slows and steadies your heart rate; for about a year i used it on and off – i was reassured to learn that this is common when trying to adjust to a horrible situation. 18 months on I no longer need it, but that’s not to say that i have accepted my diagnosis. Everyone is different and some can manage without medication but in my experience anxiety is an even more horrible symptom than depression. I hope you find your GP as helpful as mine has been.
good luck


daveo
4 weeks ago

Thanks for your input, folks. I will be trying to relax, watching some Lego movies with the kids should do it.

I guess I fooled myself into thinking I was on top of everything. In fact I thought it had been dealt with and was already at acceptance, but clearly not.

I’m planning on going to see my gp on Monday with the hope of receiving some anxiety medication as a short term plan. The long term plan would be some kind of CBT or therapy. Does that sound sensible?


mlgilber1
4 weeks ago

Hey! I had super severe anxiety before my diagnoses and didn’t know why. I wasn’t in denial because I didn’t know what was wrong and didn’t have many symptoms yet. I couldn’t even leave my house and driving in a car was horrible. It would make me physically sick. I’ve heard other people reporting getting severe anxiety as well. Then shortly before diagnosis I went numb to emotions. Not sure if it was because I always felt drunk or sedated when I wasn’t, but it’s the one symptom of mine that I don’t mind because it took the anxiety away. I also had trouble with my legs and started PT which would help temporarily and then I would have a set back. It got to the point where I couldn’t really move or feel my left leg. My neuro has me go to the hospital and it turned out I was having a relapse. Steroids don’t work on me so they did plasmapheresis which was great. I could move and feel it again immediately. I was on Tecfidera, but after the relapse switched to ocrevus and it has helped tremendously. I’ve only been on it for a couple months, but a lot of my symptoms have lessened or even disappeared. My legs are starting to feel normal again when they had been numb and tingling for over a year. I wish you the best of luck!


peterfrancis
4 weeks ago

Hi @daveo

I have and still do experience the irrational fear/anxiety thing, not daily but a few times a week.

The way I mange it is simple, I don’t, despite trying to do so by taking deep breaths and the standard calming techniques of pausing, taking things slowly and rational thinking, etc.

But, MS and rational thinking are not good friends, it would seem.
So take the safest, easiest option, is the only bit of advice I can offer really.


srh90
4 weeks ago

Hi Daveo, I was diagnosed about a year and a half ago and like yourself, it was a complete and utter bombshell… first symptoms of ON in May, diagnosed in August! Anxiety is really really common, but given everything that we have had to deal with and come to terms with it’s hardly surprising that anxiety can run away with itself!

I work in a primary care mental health service as an assistant psychologist, and we offer CBT and other therapies that work wonders for low mood and anxiety! My advice would be to speak to your GP or even self refer to your local IAPT service. CBT is the evidence based approach for anxiety and I can speak from personal and professional experience, that it really is very effective at helping to manage anxiety and reduce the impact that it has!

Hope this is helpful and that things feel better for you soon.

Sophie


cameron
3 weeks ago

I started having episodes of anxiety about three years before diagnosis with MS. The most memorable was when I was selling my home-made Christmas puddings at a charity event. As I was taking the money I had the sudden conviction that I hadn’t washed the pudding basins enough and that therefore I was potentially poisoning the customers. Could anything be more stupid? No, but at the time it was 100% real. It ruined what should have been a lovely day and left me certain I would never cook for a public audience again. The second element of my anxiety was diagnosed as ‘catastrophising’. You get the initial worry, try and put it out of your mind but it morphs into a bigger worry, which pops into your consciousness at ever more frequent intervals (e.g I’m walking badly this morning, maybe it will get worse, maybe I won’t be able to work and if that happens I can’t pay the mortgage so what will happen……etc etc). The first help I got was the realisation that the feeling is as much part of the illness as physical symptoms. Knowing I could expect it and see it for what it was i.e. MS messing with a perfectly normal brain – really helped. I had counselling initially, but the biggest help was my GP. She told me that anyone diagnosed with a long-term condition undergoes a change in their mental state. She said that I needed antidepressants ‘to get me thinking in the right way’. They do just that, even though the meds are low-dose. Knowing this, I wouldn’t worry if – like me – your short-term fix of anti-anxiety treatment ends up as a permanent part of your MS regime. xx


grandma
3 weeks ago

Hi @ daveo Im one if the old codgers, am 62, have had the beast for 25 years. My ms nurse reckons all,of us with ms should be on a low dose of anti- depressant. Im on 10mg, but have a pill splitter as 10 is the lowest dose available and I reckon even 5 will help me. She thinks that those of us with ms need it just to manage day to day life. Don’t worry about it becoming addictive, the pros massively outweighs the cons. Worth considering?😍


grandma
3 weeks ago

By the way, forgot to say, will be very interesting to see if you get any CBT. Apparently despite all the recent hype a) you can’t get it, and b) if you can in your area, it is down to your GP, and if he has a conscious and doesn’t believe in cannabis in any form he can refuse to prescribe you any. Great isn’t it, the government says yes, but your gp can refuse to treat you, work that one out!


mlgilber1
3 weeks ago

@grandma CBT is a form of therapy, cognitive behavioral therapy. I think you’re thinking of CBD. I don’t know what it’s like in the UK, but CBD in the US is legal everywhere because it doesn’t have the THC from marijuana in it so it can’t get you high. Marijuana is only legal here in 23 states I believe. I hope you’re doing well!


daveo
3 weeks ago

So, thanks to all who took the time to reply. It has been very useful. I saw the gp today and I’ve been prescribed some anti depressants that also help reduce anxiety problems and I’ll be signing up for CBT in the near future. The mental battle is equal to the physical and I realise this now.

Thanks again

Dave


vixen
3 weeks ago

Hello @daveo, yes, the antidepressants should help and I would deffo look into CBT. I’ve gone sailing through life without ever suffering anxiety and yet, in these couple of years since diagnosis, it creeps up for no apparent reason. Suddenly feeling uncomfortable being around people, nervous about travelling, weird things like that. I love @cameron’s story about the Christmas puds, that’s a great example of how easy it is for things to spiral out of control. There are, by contrast, some positives that hopefully come out of your diagnosis too. A focus on wellbeing, developing a new sense of priorities, re evaluating plans, life plans and relationships. You’ll get there, all the best x

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.