Really struggling :(

I’ve started to really struggle with my symptoms over the past few months but being without a 100% diagnosis means I’m also without treatment/assistance part. :frowning:

(I do take 50mg amytriptaline but this is all and it isn’t relly helping).

I’m struggling to walk more than a couple of 100m and my gait is slow, awkward, painful. Rising from a sitting/lying position is near impossible due to muscle tightness in my hips/thighs and muscle weakness, poor balance. What can I ask my GP for to help with this?

The crushing pain from the muscle tightness and crawling sensation is really bad 24/7, the amytriptaline and anything I can get over the counter isn’t helping. Are there medications my GP can perscribe without a 100% diagnosis?

I’m struggling with fine motor control meaning it’s difficult to type, write, text (I work in an office), what aids could help with this as I need to be able to work to support myself.

I’m struggling with focusing, tracking words on screen etc. Other than an opticians appointment is there anything else I could ask to have done or that might help with this?

I’m also really struggling with continence issues, what is there available to help with these issues? Currently I’m wearing pads and praying I don’t have an accident whilst at work.

Sorry for the essay, I just really need some advise right now.

Botox injections may be an option for the bladder (am hoping for myself); need referring to a urologist. Anti collinergic/antimuscarinic medications like vesicare may give you enough control not to need a pad but you will probably need a lot of convincing first. Bladder training may work. Some pads are much better than others - Tena seem well regarded. Continence clinic service can help provide free pads and advice; can sometimes refer yourself or ask GP.


Do you know what I found much support on this site sometimes my only support as I feel family do not understand. I do feel sometimes its a post code lottery whether you dx or not. It is so frustrating but I am trying to learn to cope without dx as I have realised this can go on for years but it does help to know you are not alone.


Sorry Jan again you mentioned money to support yourself, have you applied for DLA


Hey hun…sorry to hear you are stuggling… a supportive gp is a must…if yours isnt see another in the practice. You should still be able to get help with meds even without a dx…as others have said a continance advisor would be a first option and they can always refer you to a urologyst if necessary.

Am not sure if you want work involved but access to work scheme may be able to help you with equipment re work and there are programs that you can get that are voice activated re typing. I have treied Dragon naturally speaking but am still training it to recognise all my voise/speach and so far its still making allot of mistakes…and for how much it cost me…am less than impressed!! Acess to work can be contacted via your local jobcentreplus or the direct gov website. I think pc world also do a pen thing that you can write notes with by hand and it transfers them onto your pc…not sure if that is literal or whether it then changes your nahd written notes into typed ones?? lol

I would see how your optitions gos and if he feels it necessary will write to your gp for a referal to see an opthalmic consultant.

OOh good idea re DLA you can claim this if you are working… also Working tax credits if you have a disability. As long as you are not working over 30hrs pw and more than 16 pw…


Hi Tabitha

You do not need a dx to get help.

Either speak with your GP or contact your neuro with regards to getting some better pain relief. Amitryptiline doesn’t work for everyone. It didn’t for me and as I work full time my neuro was reluctant to increase the dose too high in case the side effects impacted on my job. There are other meds available and it can be trial & error to find the right one for you, but it’s definitely worth it. I’m now on clonazepam and pregabalin.

I also have issues with things like typing & my eyes focusing as they should. There are things that may help you at work but it may be prudent to first see your optician for an eye test - if you’ve not recently had one done. I’ve had ON twice in my left eye - the vision in my right eye is not bad at all but because my eyes don’t work ‘together’ focusing is a problem for me. I now have…oh I can’t remember the name…but something (lol) in my glasses to help with that. Having said that it can also depend on how I’m feeling too. Some days my vision (focusing) is worse than others - as it everything else.

I think I’m right in saying that you can self refer to a Continence Clinic - your surgery should have some contact details.

Whether you contact your GP or Neuro - please don’t suffer in silence. Speak with the powers that be and tell them what you’ve told us.

I’ve also pm’d you - I hope this is okay.

Take care

Debbie xx

For the muscle tightness, you could ask your GP for a referral to neurophysio and also about baclofen, a muscle relaxant. I know people who take it who aren’t diagnosed.

For the “crawling pain”, it sounds like you need either an increased dose of amitriptyline or something different/extra for neuropathic pain (e.g. gabapentin or pregabalin).

Dragon Naturally Speaking is the main voice recognition software, but the best one is the Professional version which is very expensive. You also need to buy a really good microphone to cut down on distortion. Perhaps your work would pay for it? An Occupational Therapist could advise you on other aids. Does your company have one? If not, your GP can refer you.

Re your vision, you can start with an optician’s appointment, but it sounds like you need to see an ophthalmologist. Your GP can refer you.

Re continence, there are specialist nurses and clinics. You can self refer yourself to these in some parts of the country, so why not google to find your local clinic and give them a ring? If they need a referral, then it’s the GP’s again. One thing you can do at the moment is make sure that you go to the loo regularly, even if you don’t feel you need to. If there’s less in there, then there’s less to come out when you don’t want it to!

Make sure and book at least a double appointment at the GPs - it sounds like you’ll need it!

Good luck!

Karen x

Thanks for all the advice.

I don’t get on very well with Dragon as I’ve tried it :frowning: I think maybe my speech is too mumbly?

I will be going back to my Gp regarding medication now I know he can actually help with this.

& will try to follow up on lots of your suggestions :slight_smile: