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Advice please

I got told I have MS 3 days ago by an A&E dr, who also said I have to wait for my neuro appointment in 2.5 weeks to make it official and to ?treat my symptoms. I’ve had chronic pain for years that’s unexplained, 2 years ago I started getting pins and needles and loss if feeling in my hands and they said it was carpel tunnel, I had an electric test that showed nerve entrapment in my neck, they referred me to an orthopaedic surgeon who did a c spine MRI and said my spine is structurally ok and I have a disease of the nervous system & referred me to neuros. Since this I now get pins & needles in my legs and right side of my face and lose feeling in them, the gp gave me tramadol and sped up my neuro appointment. This past week I’ve been to the opticians as I have pain moving my right eye and my vision is worse in this eye, she’s also written to my gp as she saw something on the back of my eyeball. I’m also constantly feeling the need to pass water but I can’t go and this is keeping me awake, I went to A&E and there’s nothing physically wrong but I do have right sided weakness. On top of all this I feel a bit like I’m drunk, my body isn’t moving how I want it to, I’m exhausted and very clumsy. My family have been useless and are burying their heads in the sand. I feel really low and was wondering what happens next? Is it likely the neuro will give me an official diagnosis or anything to help my symptoms as I can’t function properly (which isn’t fair on my children)/ is there anything I can ask him for? or is there anything I can try doing to help myself whilst I wait?

hi FG

well at least you have an appointment with a neuro soon.

until then try to note your symptoms, when they began, if they got got worse, when/if they stopped.

this will be helpful for the neuro.

for now be kind to yourself. rest as much as you want to. it feels wrong when you have always been busy but now it is what your body needs.

stay cool because this heat makes most of us wilt,

family and friends really struggle to understand. to be honest i struggle to understand even after 6 years with ms.

they will eventually understand what you are going through.

your neuro will probably discuss DMDs with you if you get a diagnosis but you can ask for meds to treat specific symptoms. your gp can also help with this.

i don’t know how old your children are but the ms society have a range of publications that can help you understand what is happening and why. the booklet for RRMS has a diagram of demyelinated nerves and shows how the signals get interrupted.

my eldest son was an apprentice electrician and he got it straight away. he said he’d do me a rewire if he could - bless him.

take care and good luck

carole x

I’m surprised an A&E doctor told you you have MS: I thought that only neuros could make that diagnosis and only if the patient meets certain criteria (see Diagnosis, under What is MS? at the top of the page and look for “McDonald criteria”). Have you had an MRI yet? MS is very rarely diagnosed without an MRI these days unless there is a medical reason why the patient can’t have an MRI.

Carole’s advice about a symptom diary is great and well worth doing. When you go to see the neuro, take it and refer to it as you answer his questions but don’t offer him a copy until the end of the consultation. He’ll want to hear you tell him yourself about your symptoms. Unless you have already had an MRI, he’s very likely to want you to have one, and he may want you to have other tests. Evoked potential tests and lumbar puncture are both common: EPs are painless, lumbar punctures aren’t bad but drink plenty of caffeinated drinks afterwards, and I mean plenty.

He may be able to give you pain relief and something for your problems with urination while you wait for a diagnosis. If he doesn’t offer, ask.

Good luck.

Thank you both. The A&E dr said I have it but that only the neuro can officially diagnose. I’ve had 2 MRIs (1 for C spine and 1 for lumbar spine) but both were done by orthopeadics and the last one + my symptoms led to neuro referral not sure if there were any leisions? But the A&E dr kept saying because my PMH shows related issues over past 2 years she’s certain it’s MS, I feel left in a bit of limbo, I’d already thought it’s MS but I’m now worried it’s not confirmed officially soon because at least it’s an answer and we can plan a way forward if that makes sense. I’m definitely going to do the diary as my brain is like mush ATM. What is an EP test? I’m terrified of having a lumbar puncture :frowning:

You cannot be forced to have a lumber puncture, if you really do not want it politely refuse. It sounds like they already have enough to go on anyway so would not be vital.

I refused one on those grounds and the neuro agreed it would just be protocol and was not necessary.

My own reason for refusal was actually because my husband was freaking out about it ( won,t dwell on why but he did have good reason )

Urinary retention is uncomfortable at best and likely to best eased by self catheterisation…call your local continence service or ask neuro to refer you to the MS continence nurse if your hospital has one. Sooner rather than later.

Good luck.

EP is evoked potential and it’s like an ecg of the brain. The nurse who did mine measured my head and stuck some things like mini ecg leads on various points of my scalp. I sat on an armchair and watched the non-moving square in the middle of a moving chequer board on a tv while the electrodes recorded the activity in my brain. It was completely painless and is the only hospital test that has involved sitting in a squishy armchair and watching a tv screen!

A lumbar puncture is part of the diagnostic criteria for PPMS but you have to sign a consent form before they can do it and as Anon says, you have the right to refuse. I found the LP itself was fine but I got the headache afterwards, probably because I didn’t drink enough and not enough of what I did drink was caffeinated.

Thank you, my son had a test like that for epilepsy years ago. I think if they want me to have a lumbar puncture, I’ll just get it over with as being left without a definite diagnosis scares me more! I’m so fed up of feeling rubbish and teary! Thanks for all the advice, I can’t really talk to anyone who knows me as they can’t deal with it :frowning: xxx

Hi Feeling Glum (when you’re feeling better you’re going to regret that choice of name :slight_smile: ) Just a thought, have you had a urine test done to see if you have UTI? If not ask your Dr to do one as soon as possible. It took me years to realise that most of my “bad patches” (including spending a whole months in bed) were due to untreated UTIs. Most of the UTIs that I’ve had have not shown any of the usual symptoms, I’ve just felt I’ll and that my MS is giving me a really hard time. I now send a urine test in the the nurse at the DR’s surgery as the first sign of having a bad patch and it’s surprising how often it shows that I have a UTI. You must be quite frightened by all this and know what you mean about family, 20yrs + and some of my family still don’t get it! Make sure that you have someone who you can really tell about how you feel, even if you feel that you have to put a brave face in front of others. You’re right, it is easier if you can put a name to what is wrong with you, it is good that you will be seeing a neurologist so soon. You don’t say how old your children but if they are old enough get them to help out as much as possible. You are poorly and need a bit of a hand now, the same as if you had flu, it doesn’t mean that this is how you will always feel this bad! Even if you children are small they will love to feel like a big girl/boy by helping mummy, “mummy’s a bit poorly today so you could be a big help by passing me the what ever” Look after yourself xx

The MS society produce a whole bunch of publications including one that explains MS to the children of people with it. Have a look under Support and find Publications and library in the left-hand menu bar - you can download the publications or have them posted to you. They’re worth looking at, I found some of the publications very helpful when I was first diagnosed.

There’s another thread on here about lumbar punctures - I can tell you for certain you don’t need one for diagnosis. I’m glad no-one has ever suggested I have one - I’ve seen something like seven neuros over the years and they’ve all been sure that I have MS, on the basis of symptoms and MRIs. Why put yourself through the unpleasantness of a lumbar puncture? Better to concentrate on getting some help with symptoms and discussing whether dmds are the best next step. Just my own opinion, obviously.

It depends what type of MS is suspected: an LP is listed as being necessary in the McDonald criteria if PPMS is suspected. That said, it’s not a definitive answer: not everyone who has MS has the o-bands in their spinal fluid, so while a positive LP is strongly supportive of a diagnosis of MS, a negative one doesn’t entirely rule it out.

When you get right down to it, none of the tests are essential, but they do make it easier for the neuros to make a diagnosis and provide any treatment. Sadly, for those of us with PPMS, DMDs are not an option.

Feeling Glum, please let us know how you get on.

I found that once I got a definite diagnosis my family were much more supportive. Understandably they didn’t want to believe me until I had it in writing

Hi FG

I don’t often visit this forum but your post made me glad I did tonight. I can fully understand why you’re feeling as you do, I was diagnosed with PPMS a year ago and felt much the way you do now. I also had mri scans done by orthopaedics and they determined I had ms but sent me to a Neuro for confirmation. I had to have a Lumbar Puncture and can promise you it’s not the huge ordeal people think it is. The worst part is when they put local anaesthetic in so it’s a bit of a burn. If you’ve ever had blood taken its not much worse. If it’s the difference between a definite diagnosis or not I’d have no problem having it done again.

As for the urine retention, it can be sorted out very easily. I was taught to self catheterise by the continence nurses and it really isn’t a big deal either. Like you that was one of my most distressing symptoms and I was really angry as nobody seemed to see it as a problem until I saw the continence team who discovered how much my bladder had stretched and referred me for training before I even went back to the doctor. I now go through stages where I need to catheterise often and then sometimes go months without having to do it at all.

What I would suggest to you is to contact your local adult services and request an Occupational Therapy visit. Mine was fantastic in getting aids put in to my house to make life easier but she also offered me and my daughter access to counselling. My daughter was referred to a service for young carers and she is a new kid now. They even came to the house and sat with both me and Jen so she felt comfortable saying how she felt about my ms and how I managed it and we could come to agreement on many issues. I never imagined that she’d ever cope as well as she does now. There are services available to help if you know where to look. Hopefully your Neuro will refer you to an MS nurse, they’re also worth their weight in gold.

I just wanted to let you know that although things seem really bleak at the moment, it doesn’t always have to be like that. There are some lovely people on these forums who can support you more than you imagine. Sorry I’ve written an essay but I just wanted you to see that you’ll be okay. Take care and feel free to message me if you have questions.

Cath xx

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Hi, I might well regret my user name, hopefully sooner rather than later! A&E checked me for a uti and ran scans and every test going and proved it’s a neuro issue making me have an over active bladder. My family are really getting to me I think I’ve figured out that they don’t possibly believe I could be ill as I don’t tell them much about my symptoms as I only see them when I have my kids with me so I won’t focus on the negatives and upset my kids. I’ve just decided to shut them off until I feel stronger. My children are 11 & 6 but my son who’s 11 has a few disabilities and is unaware of anything that’s going on. My daughter has been a bit helpful but she’s getting very upset and worried about the state of me (she found me on the floor a couple of days ago and I couldn’t get up for a while) I’m trying to keep things hidden as much as possible ATM but I think I’m now more scared that they’ll say it’s not MS and I’ll be left with no answers or help. MS fits like a glove and I’ve started getting support so I think I’m scared I’ll lose it, part of me thinks that’s a bit irrational as it fits so well and tests are all showing my issues are nerves and neuro but I think it’s how people around me have made me feel. Thanks for posting xxx

Thank you, I’ve been reading lots of them and it makes a lot of sense as to how and why I’m feeling like this xxx

Thank you. My bladder isn’t in retention, it’s over active and constantly saying I need to go even when I don’t, it feels like a uti without being a uti and no burning. It keeps me up at night and is driving me mad. I’m trying to resist the urge to go and hold on till the pain is too bad as I’m hoping it will help train it (not sure if that’ll work?!) the A&E ran every test possible and said my bladder is a neuro issue. I’ve already got quite a few adaptations to my house as my 11yo is disabled but I think I will get an adult service OT round as I do need more than we have to help me stay upright and less accident prone! I think my biggest worry ATM is that the MRI is clear or the neuro decideds it’s not MS as it fits like a glove and I’ve waited years to get the right answer and you’re right the online support I’ve found has been a massive help but I’m tormenting myself that maybe I shouldn’t use it as it’s not confirmed, I think that’s down to family treating me like I’m some kind of fraud who’s not really suffering these things. The emotional turmoil is awful… 1 week till I see the neuro and I’m on a countdown as I desperately want the answer set in stone so they can help me stop feeling so awful. Thanks xxx

We’ve all been where you are now so understand exactly what you’re going through. You’re NOT a fraud, even if it isn’t ms there is obviously something neurological wrong with you. Family do go into denial, mine did too, and then felt really awful when it was confirmed but they are probably living in hope that it’s something treatable not disbelieving that you’re struggling. You have to give them time too, nobody wants this to happen to someone they love. And my MRI doesn’t show loads of lesions, it was my Lumbar Puncture that got me my dx as it proved beyond doubt that I had it.

Nothing I can say will instantly make you feel happy at the moment, limbo is very stressful. If you’re struggling at home you should see if there’s anything the OT can help you with. I wish you luck with your appointment with the Neuro. Just think that even if it isn’t ms, they should be able to get you an accurate dx. You’ve got a date to look forward to. xx

Feeling Glum, you could be describing my bladder until about 10 days ago. When I described the problem to my neuro (I happened to have an appointment with him anyway), he prescribed solifenacin. I started them that evening and noticed a difference very quickly; I’m impressed. Less impressed with the leaflet (it’s h-u-g-e) and the list of possible side effects but so far the only side-effect I have experienced is dry mouth - not unpleasantly so, just dryer than normal. I can live with that.

Contact your GP about your bladder issues, there is treatment available.