elliesmith 03/03/18
Last reply 1 month ago
Mobility decreasing, diazepam started

Struggling still.
Started diazepam yesterday to try help me get through the anxiety my injections are causing.
Feels like my mobility is still getting worse and infant understand how… It’s like even though my nerves are no longer freaking when I try to move as much… The muscles etc are saying not a chance :/
Moved onto using a crutch the past few weeks which to be fair has made me feel better balanced and for the first time in months in walking talk when I can walk…
But walking, moving everything hurts more and more? Just moving my legs from laying down to bending them up is taking my breath away with the pain. (Like I’ve done leg day for a week or 16+ hours on my feet)…
Also having more spasms and tremors in recent weeks driving me mad

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stumbler
4 months ago

@elliesmith , it’s still early days for you.

You need to learn to live with your MS. So, rather than fight it, embrace it. Stop pushing yourself too hard and give yourself time to learn to live within your present capabilities.

This will allow you to start to recover and start to get stronger.

This is a battle you can’t win. But better to lose a battle and win the war. 😉


elliesmith
4 months ago

I’m not really trying to fighting it if I’m honest. I am trying to learn to live with it.
But I’m feeling more than useless when I can’t move without being in overwhelming pain. Which means… I’m unable to do much of anything..
I’m physically capable but the pain, discomfort and confused signals are well making things difficult…
Doctor was saying that seems I’m getting signal overload a lot. Where I’m trying to walk and then I’m crying I can bearly breathing im in utter agony but I can’t feel the pain just have all signs I’m in agony.
I get brain overload too where I just stop being able to do anything/ it’s like I’m comatose but I can sort of be aware of the world around I just can’t respond. (I’m used to this one, as it’s been soemthing I’ve had for many years).

Sorry yeah I just. I’m trying.


stumbler
4 months ago

@elliesmith , I’ve just re-read all your posts to try and understand your full picture.

I am concerned that you have a Neuro, who feels it’s strange to get a diagnosis of MS at the age of 25. Scotland is a hotbed of MS, so I would have expected your Neuro to have a better understanding of this condition.

It’s good of you to have been in touch with Future MS. But as this name implies, it is research for the future. You need some help and advice now, to review your symptoms and the medications prescribed.

Are you in contact with your MS Nurse? This is a Nurse Practitioner, who specialises in dealing with MS patients only. They therefore have a more holistic view of MS management, with access to all ancillary services, e.g. physio.

You can locate your MS Nurse using this website :-

https://www.mstrust.org.uk/understanding-ms/living-ms/map-ms-services

So, call them up and ask for an urgent review.

We need to get you as pain-free as possible and allow you to move again. It’ll be “baby steps” to start…………….


elliesmith
4 months ago

@stumbler
I was a bit confused with the comment on usually older folks being diagnosed, then again I live in an area where we are severely out numbered by older generations, so I guess in this area it would probably actually be rare to diagnose someone young for this specific neuro.

Futurems was one of those I’ll do it because any research is good I’d I can help even better, certainly all about the future though and not the now, but it’s in a way a selfless selfish act.

I contacted my nurse specifically about my anxiety and coping with my injections earlier in the week. I was given options p, get hubby to do them, try diazepam from gp, take a 2week break then restart and lastly swap to another drug (Plegridy) once she’s cleared it neuro.

I’ve spoken mostly to my gp about my physical health, mobility etc but there’s no red flags to her. My ms nurse is now on holiday til next week.

The gym thing , is like an alternative to taking up physio time , waiting lists are very long for those and often not close which is useless to me. The gym offer to help folks with a range of disabilities and illness into the gym into a healthier lifestyle. The bloke I spoke to and did some balance exercises with was super nice, has realty with ms before and his biggest thing was getting my balance better so I can reduce reliance on sticks/well crutch now.

It’s like there’s support here but I haven’t a clue how to use it at all.. I’m at a level where I can manage with I front !I’ve as soon as I start to do anything my body just doesn’t want to know or work. It’s rather just ache and get overwhelmed. Recent two weeks spasm and tremors gave been a thing, no idea where they’ve come from but they are here and screwing with me.


stumbler
4 months ago

@elliesmith , don’t make excuses for your Neuro. They’re paid a lot of money to do their job. There’ll be an exchange of information that should allow them to keep up to date with the bigger picture. My view is that MS isn’t their speciality!

GPs are just that, General Practitioners. Jack of all trades, so can’t be expected to have in depth knowledge of MS.

This is where the MS Nurses come in. They live and breath MS and nothing else, so are probably more in tune with managing your MS than either the Neuro or your GP. So you really need to have a full and frank chat with them about all of your concerns and treatment options.


elliesmith
4 months ago

My neuro is simply put a neurologist he doesn’t specialise in MS. I don’t think there are many neuros here that actually do. But he is the head of Tayside neurology so I trust him even if I’ve only met him twice.

My gp is wonderful and yeah she seems to be learning at the same rate as I am, seems like she’s doing her research.

In terms of ms nurse, so in an ideal world I could have amping chat with her about how everything’s going, but in the real world the odd phone conversation and an appointment once ever few months is all I can get.
I can’t prove what she can’t see.
I’m due to see her in 25th of April for an actual appointment, then maybe we might get a chance to actually talk. Til then I need to keep going forward with what I’ve got and hope for the best.


grandma
4 months ago

Dear Ellie, you talk a lot about exercise, have you tried swimming? Best exercise from all aspects, you don’t even have to be able to swim! I can do things in the waterI can’t do on land. If you are unsure in the water take the other half with you and hold his hand. Swimming exercises ALL miscues and the water takes the weight.😍 Worth a try? Jill


elliesmith
1 month ago

Thanks for your reply. Sorry I didn’t see it sooner.
Sadly swimming isn’t much of an option. My husband wouldn’t go into a swimming pool without being dragged by his hair and well I can’t do that to the poor man (hydrophobia).
Ms personally I don’t much feel confident going in with it a stick on a sloper surface…


stumbler
1 month ago

@elliesmith , don’t give up so easily on the swimming. I used to go three times a week and I use two sticks! Yes, it is slippery, so extra caution is needed. But, my sticks weren’t the only ones parked up against the wall.

Let the staff know that you’re unsteady and they’ll keep an eye on you. They’ll even wheel out their hoist, if you need it to get in and out of the pool.

There’s only one stumbling block and that’s your desire to get out and do it.

I feel sorry for your husband. How does he manage in a bath? 😕


elliesmith
1 month ago

I’ve considered it but I’d be too embarrassed amung other things. I mean my team this weekend are having a pool party and I can’t go. I’m not letting them see me even more vaulnerable than normal. It’s also a long distance locally between the pool and our home.
Too many fears right now, if I had someone to go with who understood then sure, but I don’t.

Getting into the pool… Yeah that doesn’t even warrent thinking about :/ …

And we have a level access shower and he does very short showers as much as he possibly can, unfortunately for him, because of his allergies and skin problems he HAS to often scrape dead skin off etc and that’s easier when your skin’s wet.
In over a decade I’ve known and been with him he’s taken 3baths. None of which were more than a puddle and I had to be in the room.


stumbler
1 month ago

@elliesmith , I fear that you may be making excuses now. Have a word with your MS Nurse and see if they can arrange some sessions for you in the Hydrotherapy pool. That’ll allow you to build up your confidence before you consider going swimming.

Your husband’s condition isn’t really to be laughed about, is it? What on earth do you do for holidays, that must be really restrictive?


elliesmith
1 month ago

I’ll try in the future I’m sure. But without someone by my side I’m not so confident. I’m also not allowed to travel on my own right now. Between my balance and my memory.
They won’t offer hydrotherapy at this point.

In terms of my husband. We manage. Our holidays are once a year to a convention and we work security here. (Currently on day one of 7). I can’t do sun or sand and he can’t do sea. So we’ve found we much prefer cities. Our honeymoon was in Berlin it was great.


stumbler
1 month ago

@elliesmith , so maybe one for the future. You can only do things when they feel right and comfortable. 😉


charmc4
1 month ago

Hi @elliesmith, having had simalar anxieties from childhood experiences.. I
understand how you feel and thinking maybe you could take a look at other alternatives such as Yoga or Pilates? These can be done from the comfort of your own home .. YouTube, mobile phone, tablet etc which for me as a busy mum of 4.. it’s my only alternative haha .. I believe it clears the mind, it’s great exercise relaxes you.. all the things which MS suffers need and you can chose where to start how much you do there’s lots of people with MS that have their own Chanel’s and understand the different s levels of not only Ms but exercise in general ( the Internet is a great resource) I also believe looking at holistic alternatives also take your mind off of the symptoms sometimes concentrating on what you can’t do is already a hinderence 🙁 looking at diet and inflammation is also very important and what we feed our bodies.. diet is the biggest cause of inflammation and only exasperates neurological complaints .. an allergy test is also a great idea!! basically just food for thought really .. everyone is different but hopefully a look a diet might help with your husband who is also suffering by the sounds of things.. it’s a lot to deal with on top of that my heart goes out to you and I really hope things get better for you! Good luck xx


elliesmith
1 month ago

I’m part of the ms gym on Facebook and do try but I forget a lot. I do have to keep moving otherwise I seize up anyways. always find my mobility gets worse when in hospital.
I’ve changed my diet and it’s help my insides but made no considerable difference to anything else unfortunately.
My husband has severe allergies so diet has aleays been a challenge and I’m allergic to wheat and lactose. yey.
I’m currently doing security for a week at a convention it’s crazy and it pushes everyone to their limits. I’m doing more in the next few days than I’ve done in months. It challenges me even when I’m fit as a fiddle.
I’m currently using CBD a bunch of vitamins and a tens machine to try keep walking.

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