Friday diagnosis awaiting referral for treatment

Well not thinking I would ever have to write on this I have taken 6 days to get my head round my diagnosis. Saw neuro last Friday having suffered a second attack of myelitis affecting my left leg this time and my right last year from which I made a 99% recovery. Long story and very boring, but starting having numbness in early 2011 and finally had MRI etc etc and diagnosed with spinal tumour on t12 /l1 and a brain tumour then day of surgery told not not tumour but lesions and had attack of myelitis and go home and live your life. Before surgery had massive dose of steroids to prepare for surgery and after a long 3 month recovery and seeing neuro told to get on with it only 50% chance of ms. Signed off in sept this year and felt great. 4 weeks ago cleaned floor on hands and knees and in matter of days numbness returned to left leg focusing round knee. Back to neuro and no scan needed but very positive it is ms. Now waiting for referral back to NHS as been told that I can qualify for injections. Questions…numbness and pain in leg. How much do you rest it as neuro seems to think carry on but go says rest up give chance for body to repair itself.? do I ask for second course of steroids as first course done nothing? Does massage help relapse or hinder recovery? Acupuncture is it helpful? Do I carry on with Pilates even though shattered after and very stiff? Do I ride the pain and stiffness? At what point do you go back to gp as do I have to just give it time or should I be more proactive in my recovery? I know everyone is different but would be great to get some advice as I think people going through it are much better than gp sometimes. If I need to push referral to ms nurse then happy to do it but don’t want to be fussy if I just have to be patient xxxx Thanks guys

sorry that you have joined our exclusive club.

now the question of whether to rest or do stuff -

hmm… do stuff that you want to (as opposed to the endless chores) but listen to your body. if it tells you to go for a lie down in the middle of the afternoon, then go and lie down.

are you working? if so i assume that you are on sick leave but when you go back have a think of what improvements could be made for you. there is lots of advice out there and Access to Work help with this sort of stuff.

pilates is good for everyone but especially good for people with ms. core body strength helps with stability. a lot of physiotherapy is based on pilates. but again listen to your body and rest when you need to.

there’s no reason why you should avoid acupuncture. it works wonders for some people - like everything else we are all very different and it doesnt work for some.

regarding pain and stiffness - there are a lot of meds for neuropathic pain. ask your neuro or ms nurse.

if your neuro is looking into injections then you will get an appointment to choose your DMD.

you can go back to your gp any time, just the same as before your diagnosis.

don’t be too eager for more steroids. they need to be kept for relapses.

have you got support from your family? if not, you will need someone to talk to and your local branch of the ms society is a good starting point.

take care hop along and remember that ms is not a death sentence, just something that needs adapting to

carole x

Thanks. That is very helpful. It is so frustrating to be laid up as feel I should be doing things. I am not working at the moment as been so tired and I work for myself for 17 years but I am desperate to get back to it. Thought after the last episode I would have a year off to concentrate on myself and being healthy. Ironic now. I think what bothers me the most is I have 2 girls who have just seen my father pass away in April this year who suffered for 30 years with ms and I don’t want them to think that I am the same. One is 17 years old and the other is 11 years old. They are good kids and had a lot to deal with this year. My husband and I split up last time I was poorly as he couldnt cope with my illness and had a fling with someone who thought I was dying. Nice hey. After lots of soul searching and huge amounts of grovelling I decided to give him another chance and I realise that men have a very different way of dealing with grief and stress. Obviously my natural positivity has been tested this year and to have this relapse is yet another hurdle and I know I will be ok but I want to be as proactive as possible it must be my stubborn nature. To have someone else to chat to and air my concerns is great. I think as a mum you want to be strong and a good role model. I am looking forward to my referral to the ms nurse. It just takes time and feel a little in limbo until the referral … Thanks for your kind words really appreciated xxxxx

Great reply from Carole :slight_smile:

I just wanted to add that you should have a look at the msdecisions website before you have your appointment about DMDs (disease modifying drugs; the injections). Knowing which one you want generally speeds up the process.

This must be scary all round after your dad’s experience. Please know that medicine has moved on massively since he was diagnosed. DMDs help to reduce relapses, reduce the severity of remaining relapses, prevent disability and even extend life expectancy. There are also a whole host of meds to help symptoms these days (most of which weren’t around when I was diagnosed 14 years ago). The other thing that the kids might want to know is that your father’s MS does not predict your MS - parents and children with MS can have completely different types and severities.

I really hope your husband gives you the right support from now on.

Re getting over relapses, fatigue and exercise: Listen to your body. Don’t overdo it. Rest before you get tired. Keep cool. Keep well hydrated. Be ruthless with your priorities - if it isn’t essential, don’t do it.

I hope things calm down soon.

Karen x

Hey HopAlong

I’m not officially diagnosed - had two episodes of neuro symptoms with non-specific MRI lesions and been told suspected MS and it’s a waiting game.

I just wanted to offer you some support and advice.

Firstly let me say well done for getting through the last year - having your health battle/relationship issues/ losing people you love must have taken it’s toll (my neuro symptoms flared Oct 2011 shortly after my partners mother died and I also had to give him the news his brother died in a car crash - it was a difficult time). Your partners very lucky you forgave him - I hope he’s their for you now.

Try to keep stress down to a minimum - unfortunately this as well as other illnesses and heat play havoc with our symptoms.

Pilates is a great thing to do. I loved dance but found I just couldn’t stick with it as came home in agony. I’ve been doing yoga and though at my worser moments I did feel tired after it is good for MSers to build core body strength. As long as you’re not getting a permanent worsening of your symptoms or pushing yourself to far in the class it’s a good exercise to do.

In terms of other activities listen to your body: I had a tumultous year of symptoms and wasn’t very social, prioritised work and kept weekend quite sedate. Last few months I’ve been 99% normal and have been back to my normal activity level and then now the last few weeks after my flu jab and getting a cold my old symptoms are reflaring and I’m knackered/bladder up spout and spasms so I’m back to taking it easy (just cancelled meeting my friend and leaving work early).

So it is a case of learning your bodies warning signs. It does become easier with time to learn when you’ve done too much and learn your limits.

I tried osteopath as had a lot of spasms - really helped my neck and he was fab as said he doesn’t need to see me permanantly but just when I feel like I’m running into issues which is nice, some do try and con you out of your money. Acupuncture made me feel terrible (sick and disorientated) but it has worked for others I know so I would say don’t let my comments put you off. But be warned that some do try to push you to buy more things or attend extra sessions. If possible get someone to recommend.

In terms of your children as Karen & Carole have said - everyone’s MS is different and the meds available today are much better. So many more people achieve long fulfilling lives - you just have to speak to people on this forum to realise it’s not all doom and gloom.

Lastly definitely do speak to your MS nurse/GP about meds. It’s amazing how we start to tolerate pain and discomfort. When I took diazepam for my spasm it was a huge relief - I didn’t realise how much I was tolearting till the pain was gone.

Take things easy and be kind to your body. I hope things improve soon.



Thank you guys. Your replies brought tears to my eyes. It is good to get it off my chest. I want to focus on positive things and ensuring that I maintain my positive nature. I think I will go ack to gp to sort out my fatigue as that is the worst part. I am very lucky to have this forum what a lifesaver. Thank you so much guys xxxxxxxxxx