Last reply 7 months ago
Waiting diagnosis

Hi this will probably be a bit long winded but here goes. I was told probable ms after a severe bout of vertigo and double vision. This was back in june/july time and since then i have had another mri scan and am awaiting results. I am in alot of pain at the moment in my arms shoulders and legs with pins and needles also present. The worst thing at the moment though is the weeing (sorry if too much info lol) I can need a wee 3 or 4 times an hour and straight after feel i need another. The worst is at night though where i wake up constantly needing a wee then after having one and going back to bed i need another. Because of lack of sleep im exhausted so after a few weeks of this i am awaiting a call back from docs. Is there any point in going to doctors for help if i am still waiting results from neurologist department – will they be able to help with this problem and the pain. I have just been getting on with things as best i can but it is really starting to wear me down now. The pins and needles make my hands feel fat and painful and i cant use them properly though i can cope if that makes any sense. Can a doc prescribe anything or do they have to wait for proper diagnosis. Hoping somebody can help

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stumbler
9 months ago

@linzzzi , there’s no reason why your GP can’t help you whilst you’re waiting for the Neurologist.

Here’s some details about “altered sensations”, which covers a range of problems with nerve pain:-

https://www.mstrust.org.uk/a-z/altered-sensations

Follow the links to see the potential medications that can be prescribed for this.

Your GP can also help with your over-active bladder. Once again, here is some details about bladder issues, together with details of potential treatments, which your GP can prescribe :-

https://www.mstrust.org.uk/a-z/bladder-problems


linzzzi
9 months ago

Well that was a waste of time lol. Doc rang and told me to send a urine sample in to check for infection then told me to phone neurologist office to see if an appointment is imminent. That was it not even given an appt to see doc or any offer of medication to help with pain or other symptoms. Oh well guess I will have to wait for next appt with neurologist. Feeling fed up is an understatement 😢


stumbler
9 months ago

@linzzzi , GPs seem to be loathe to get involved with MS problems as it’s a specialist area.

And, there’s the problem, these medical professionals can try to bully us around to do what they want us to do. We have to have belief in ourselves and press to get the service we need.

If your Neurologist appointment was imminent, you’d already have the letter!

The urine sample is a good call, to eliminate any potential infections which could be causing the incontinence. If this proves negative, then you need urgent assistance to try and allow you to gain some quality sleep. Similarly with the neuropathic pain.

Be polite with your GP, but don’t let them bully you around.


curious-one
9 months ago

Start eating plenty of beetroot fresh beetroot, I like to blend it with water. I’ve never had and bladder issues yet myself but have read that it helps 🙂


linzzzi
9 months ago

@stumbler. Sorry to be a nuisance but hope u can advise. When I had my first neurology appt in October I was told by Neurologist that he was looking at m.s. He didn’t really ask about symptoms apart from the vertigo and double vision that led to the first MRI scan. He arranged another MRI scan to see if any new lesions. I supposed to have a contrast dye and also spine done but on day they couldn’t do dye as no doctor available but did scan anyway and said I would be recalled if Neurologist insisted on dye. I have heard nothing on scan result yet but have had appt letter through today for next July!!! I can’t believe I have to wait that long after being told probably m.s. Where do I go from here about the symptoms I have mentioned above as I’m really struggling at the moment. As it’s such a long wait until the appt does that mean they found no new lesions? It said in letter if I had any more symptoms to go to gp. I don’t understand how they can tell me m.s. Then leave me for 7 months


stumbler
9 months ago

@linzzzi , no nuisance. 🙂

Well, you have your answer for the GP now, the neuro appointment is not imminent. The ball is back in your GP’s court, to provide something to help with your symptoms. Otherwise, they can call the Neuro and discuss a way forward for you.

You could also discuss whether a second opinion is warranted.

Neuros seem to be proactive or conservative and you seem to have the latter. There are strict guidelines (the McDonald criteria, https://www.mstrust.org.uk/a-z/mcdonald-criteria), which specify the criteria for diagnosing MS, although, these are presently being reviewed.

If you don’t meet these criteria, you can end up with an interim diagnosis of Clinically Isolated Syndrome (CIS), something I describe as “Singular Sclerosis”. There are various posts on the forum regarding CIS.

As CIS can be a forerunner to MS, some proactive Neuros are now treating CIS with DIsease Modifying Therapies (DMTs), to try and stop/delay any progression to MS.

So, I’m sorry, but it’s back to your GP, with your urine sample.


linzzzi
9 months ago

Thank you for your advise you have really helped @stumbler x


bensdad
9 months ago

@linzzzi Sorry to hear you are getting the run around. Some Docs are useless and it sounds as if your Nuro is just as useless. I have found pester power works best. I realise when you are in pain you can find it hard to fight to get what you need. I would say ring your Nuros secretary and explain you need help now not in seven months. I have not looked at the links provided by @stumbler but the NICE guide is below and you may find it helpful. I wish I could help more!
https://www.nice.org.uk/guidance/cg186


linzzzi
9 months ago

Thank you @bensdad. I am feeling a little abandoned at the moment after the neuro said he is looking at m.s. It is like i will tell this shocking thing then you will hear nothing at all lol. I have a phone appointment booked for monday with doctor to discuss my symptoms and will certainly be asking why i am waiting so long for a follow up. Hopefully i can get help with the pins and needles and my weeing for england problem. Maybe i will try crying on the phone to doctor then they may help lol. Thanks for your kind msg x


stumbler
9 months ago

@linzzzi , you seem to be abandoned in between your Neuro and your GP.

Specialist MS Nurses are there to occupy this middle ground, by being more contactable than Neuros and can direct GPs in symptom medication.

Look up your local MS Nurse here :-

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

Then contact them, explain your current position and see how they can help you. 😉


linzzzi
9 months ago

Hi again i have now spoken to a doctor – he was the locum but very helpful. Told me my scan results which hadnt changed since first mri in july. Found some blood in my urine sample so it may be an infection so on antibiotics for now. He is going to inform my neuro of my new symptoms so hopefully the neuro appointment will be sooner. Doctor actually said – well you havent actually been diagnosed with m.s yet. I told him i knew that because the neuro said he wasnt going to diagnose yet till further tests. Is it normal to tell somebody they have m.s before they have further proof. Is there a chance he may have it wrong even though he seemed pretty certain. So many questions going round and round lol x


vixen
9 months ago

Hi here @linzzzi, really sorry you’re having such a rubbish time of it. To be honest, I am surprised that you would get a comment like ‘we are looking at MS’. Usually it would be framed as ‘several possibilities, including MS.’ Sadly, pester power is a necessity. You could be brave and ask your GP if there is any possibility that you could get a private referral? This is unusual, but It worked for me and I do understand that this goes against the GPS sense of ethics.

I also agree that the MS nurses are often like angels, especially if you can speak to one who can pick up on your fear and anxiety. They can pull a lot of strings. Exactly one year ago I was in your position too, but I only had to wait until Jan for a neuro appointment. More important than anything now, is that you look after and take care of yourself. If you need to cry, then cry, but for no more than 10 minutes! Make sure you rest. If it turns out to be MS then you can start to move forward. It’s really important that you do everything you can to minimise your stress levels, because stress, even in little amounts has such an impact on our nervous systems, whatever the diagnosis. I’m really glad you found Shift, you have lots of friends and support here. Good luck, stay strong, keep banging on those GP/neuro doors and keep us posted! Xx


stumbler
9 months ago

Hi @linzzzi , it makes such a difference when a Doctor listens to you.

Urine infections are the bane of our lives. They can really make any symptoms flare up until the infection is treated.

Neuros have to be sure before they give a formal diagnosis. Once this diagnosis is given, it cannot be “ungiven”, so they need to be sure. This is where the McDonald Criteria come into play.

It’s almost a case of Pre-MS and some Neuros will treat this to try and avoid progression to formal MS.


linzzzi
9 months ago

Hi @stumbler thanks for answering i have another question sorry lol. Would the symptoms i am getting now – pins and needles and pain across shoulders – be classed as a flare up and would they be caused by new lesions or a result of the lesions i already have. This disease is so hard to try and understand x


linzzzi
9 months ago

@vixen thank you for your kind reply. Neuro didnt phrase as several possibilites just m.s which has made me worry more as he seemed quite certain. Now i suppose all i can do is wait and keep pestering doctors. Im keeping myself active – i have a very naughty dog who needs walking and taking to dog training – so that keeps me walking every day but im finding it more difficult at the moment so sadly poor doggy doesnt get such a long walk now x x


stumbler
9 months ago

@linzzzi , never apologise for asking questions. It helps you and probably helps hundreds of other too.

Pin and needles could well be from existing damage. Have you experienced them before?

The pain across the shoulders doesn’t sound like a problem caused directly by MS. It may be where you’ve been feeling tense over the last few weeks. This causes us to “hunch”our shoulders a bit, so you need to try and relax this. Try letting your arms hang loosely from the shoulders…………


linzzzi
9 months ago

No never had pins and needles before but have had pain in my legs for a number of years. The pins and needles in my feet is also new but sometimes it feels like my feet are burning. Also my hands feel numb and tingly and my fingers feel like fat sausages that wont do what i want them to. Thank you for all your help i really appreciate it. I do feel very alone with this at the moment though my family have been very supportive – i just dont want to feel like im moaning all the time so just try and get on with it x


stumbler
9 months ago

@linzzzi , you should never feel alone, not on this forum.

It’s difficult to determine what is and isn’t a relapse. The first thing that is normally discounted is a urine infection, so see how the anti-biotics work for you.

There’s a useful definition of a relapse within this article:-

https://www.mssociety.org.uk/what-is-ms/types-of-ms/relapsing-remitting-rrms

Keep exercising your hands. Try squeezing a sponge ball, or some rolled up socks……….


linzzzi
7 months ago

Hi @stumbler. Just a quick update – i have had a new appointment come through for neuro on 6th march so it seems the doctors are informing him of what is going on. The weeing problem is still there but docs are having a sample off me every 3 weeks to check for infections which is good, still not been offered any help with the problem though. Pins and needles eased off for a couple of weeks but are now back and i also lost sight in one of my eyes for about 45 minutes which was a bit scary but i will wait for neuro appointment to ask about that as it lasted for such a short time. I know its silly but i feel embarrassed about ringing doctor about it as it didnt last long. I have started swimming now and trying to keep as active as i can – at least i can swim in a straight line which is more than i can manage walking lol x


stumbler
7 months ago

@linzzzi , I’ve lost the timeline on this post. Anyway, I’m wondering how many urine samples you’ve now supplied to your GP? Surely, they only need two on different days to satisfy their curiosity.

As I suggested above, it would be useful to contact your local MS Nurse and explain the situation you’re in. They are more in tune with the problems that we experience and have access to not only the Neurologist, but also related services, e.g. the Continency Nurse. It may be a quicker way forward.

Look up your local MS Nurse here:-

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

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