houdini 31/12/17
Last reply 6 months ago
Getting used to diagnosis :-/

Hi all, 5 weeks post diagnosis and start of DMT, Tecfidera. I knew on first symptoms in the shower 18 months ago of the water on my arm Feeling different, progressing to pins and needles and numbness in arm and hand. Fighting with GP to take me seriously that it was not a trapped nerve! And I am a nurse! Finally a MRI after orthopaedic referal! C5 nerve root lesion. Left with permanent pins/needles and numbness in arm and hands. Neuro first thought it was Myelitis as no initial brain leisins. Now further scans over the last year showing brain lesions, met the McDonalds MS criteria! Going through a tough time of acceptance etc and being a Dad to a young daughter, working full time and just about to move house! All rather stressful. Add on top of this Mum diagnosed with Dementia! So she’s changing in front of my eyes as my body to changes!
What a crap year!
Anyone else have nerve root lesions radically changing arm and hand feelings permanently. Struggling to cope, hate the feelings and arms and hands! 😕

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potter
6 months ago

When I had my diagnoses I had the same symptoms with my right arm as you do, my arm also hurt. I was also sent to the neuro for a pinched nerve. That was 10 years ago, I just had my first relapse two weeks ago, this time it was the entire right side of my body. It is slowly getting better just like my arm did 10 years ago. I took Rebif shots for the first 5 years and I have been on Tecfidera ever since. My neuro considered it a mild relapse and gave me a round of steroids. I am still unable to take a shower, every time I do a wave of numbing comes back. I am going to take sponge baths for a while. I would say the slightest change in my bodies temperature when I shower is my biggest problem. I still walk, without a cane, I am slower but I also just turned 65. I work in my clay studio almost everyday, I still have very strong hands, arms and shoulders. It seems like you are headed down the same path I went, I don’t see any reason why you can’t do as well or even better. We have been going through health problems with my mother in-law for two months now. It has been a crap year for us also, we didn’t even do Christmas this year, we have been stuck inside because of the Polar freeze that has moved in. Hoping the New Year will be better. Potter


californiadreamin
6 months ago

@houdini

My wife was diagnosed almost a year before you and my dad had bladder cancer etc. So 2016 was that crap year for us and wasnt expecting 2017 to be better. However between the Tecfidera (which my wife had a horrible set of weeks from 2-8 with) and lifestyle changes, she recovered most of the numbness and tingling she had and hasnt relapsed again yet. We dont expect that will last necessarily so we are just thankful that 2017 was a really good year. We took up lots of diet improvements and exercise and 2017 and we are both stronger and feel better then we have ever. My dads cancer is in remission for now.

As we cross into 2018 we are thankful that 2017 was a positive year when we expected it to be so much worse. No telling what the future holds, but dont give up hope! There is a lot to be hopeful about. Our kids were 11 and 13 and it has probably helped build their character to go through this.

Really wishing the best for you next year!


tish22
6 months ago

I noticed pins & needles in December last year. I thought it was a trapped nerve. Went docs as I was experiencing other symptoms such as walking off balance & dizziness. & years before I had a strange sensation when in the shower. It took me two visits to the docs before i got referred to neuro. Was diagnosed June this year after mri scan showed leisons. I still lose balance but the dizziness has stopped. I have just starated Tecfidera day 9. Hope things get better for you & you have a better new year.


vixen
6 months ago

Hello @houdini. My story is similar, onset, diagnosis and Tecfidera in the last 18 months. My initial sensations which came out of the blue are still there. I feel I’ve done all the mental and emotional processing around agnosis and am still working full time. However, although I’m not in pain, I am really getting bored and tired of living with MS every day. Just sister got diagnosed around the same time too so that’s rough. I get random patches of heat on my arm and legs every day, although a recent MRI doesn’t show any new lesions.

I do get strength from being able to share on this site and to know that there is a bunch of people here who really do understand what we think and feel. I also keep my finger on the pulse with current research and development and I know that for all of us, things in terms of treatment are going to get better, not worse or non existent. My daughter is grown up but I still do that parent thing and put on a grave face in terms of my own feelings and anxieties. It’s unfair that our olives are blighted, but I don’t want hers to be limited my fears and feelings, so that reins me in a bit!

Get your move out of the way, be happy in your new house and then you can start to think about your daily ‘must haves’ which will keep you on the emotional straight and narrow as much as possible. I’ve achieved quite a lot in the last six months; lost a ton of weight and made plans with husband about what we want the next five or ten years look like. This involves move, work and finding a way to appreciate all blessings. 2017 has been a rubbish year for you, me and many others. Let’s raise our glasses to hoping, and working towards making 2018 a better year x


stumbler
6 months ago

@houdini , stress seems a major contributor to making our MS worse and needs to be managed.

Life will always throw us curveballs. That’s part and parcel of life. Bad things happen and we have to deal with them.

But, bad times pass and we can then enjoy the good times again……


houdini
6 months ago

Thanks all for your comments. It’s certainly a tough disease. I know 2018 there needs to be some adjustments to diet and exercise and plough through these Tecfidera side effects! Counting through the initial weeks :-/ bored already of the cheese, tablet, cheese sandwiches to reduce the side effects!
Despite being a nurse for 20 years it certainly is challenging being on the other side of the fence. The cruelty of the disease scaring on my C5/6 nerve root leaving me with with my desensitised arms and hands. The dodging of the heat, open fires 🔥 my love now my enemy! 🙁
The nerves just go mad and painful. 18 months of this everyday feelings you never get used to. My high career aspirations have been now challenged due to fatigue and brain fog. 2018 I just want to enjoy my 3 year old girl and enjoy the simple things in life.
Happy New year to you all and wishing a relapse free year to all! X


amyb
6 months ago

Hi @houdini, I’m sorry you are having problems with getting your head around all of this. I was diagnosed February last year which caused the rest of 2017 to be a bit of a write-off. So happy to see the back of it. Fatigue and brain fog suck… there are so many things I wanted / want to do but my body says no a lot of the time. I set small goals and enjoy the little things like messing around and joking with my partner, or looking up at the stars or eating a nice ice cream. You’re not alone xx


sylvanna
6 months ago

Hey @houdini. The old trapped nerve scenario, eh? I told myself that this must be the problem for years and years, which was compounded but my GPs not investigating for years and years despite going in every few months. So it has taken me 8 years to get a diagnosis since my first obvious relapse and I now have intermittent (thankfully) pins and needles in my left hand and regular pain from overuse in my right arm. The latter seems to be the result of over-gripping and using too much force, possibly due to years of damage and my brain not processing signals properly. This is on top of experiencing all the usual paresthesias plus neuropathic pain in my legs but (again thankfully) not all the time.

My Mum is also not well and our family life is complicated (my father is very difficult) so I have to keep out of the way for the most part. @stumbler is right, stress makes everything harder to cope with. The jury is still out on whether stress directly causes relapses – I was told no by a neuro recently – but stress certainly makes my pain and tiredness worse. This is why I have been unable to work, as after completing a Masters degree (pre-diagnosis) my body just stopped functioning for a few months – I could not sleep and I was so depleted (and mentally confused) that all I could do was sit on the sofa and watch crap daytime TV.

It might seem counterintuitive but my diagnosis has been an utter relief and I hope that you will eventually be able to look back on it with some positivity. It is far better to know what you are up against than being in the dark. At least you can be pro-active and start a treatment programme. I am currently struggling to tolerate Tecfidera but I am still happier to have this option – and others – as before diagnosis with MS I was told that there were no treatment options and yet my health was declining before my eyes. Plus now you know about your illness you can make lifestyle changes to help yourself – I am trying to to see the changes that I am making as positive steps to make my life better rather than giving up or feeling left out of situations I now struggle to participate in.

Good luck!


ruggermad
6 months ago

@houdini

Your story sounds much like mine. Hang on in there fella and chill. An MS diagnosis is a massive thing to have to come to terms with. Your life will probably not change too much to what it is now so don’t worry.
You are under a neuro and you are on a good DMD. You have already started to take control of managing your MS so thats a massive positive. Try not to worry about “what might happen?” and don’t stress about the “what ifs”. Remember the saying “don’t worry it might not even happen”.

I had the same thing happen to my right arm and I was totally unable to move my arm or control my fingers when I had my relapse. In all the episode lasted about four weeks, slowly the feeling returned over time (a couple of months) and I was soon back to approx 95% mobility and sensation at that time. Four years on my arm has recovered back to normal.

I have been on the Tecfidera for three years now with no real side effects and have (touch wood) been relapse free since. With hopefully no new lesions compared to my previous two MRIs.

Just be aware that you may (naturally) unknowling to yourself go through a grieving process. I know, as it happened to me. I didn’t realise it was happening, it just slowly crept up on me. Not everybody suffers from it, some people do though.

One thing my diagnosis has done for me is that it has enabled me to see how beautiful life really is. Before my DX I was walking around blinkered and didn’t really se the beauty in life. I have met some fantastic people and share their stories with them which has been truly inspirational.

Remember “keep your glass half full” if its half empty then add some wine…….

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