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I'm still waiting.....

Hiya, been a while since I’ve posted, still stuck in limbo. Had worsening pins needles, numbness, fatigue since new year. No neuro appt in sight, left to carry Probable MS label a while longer, quite fed up with it all. But, neuro gave me ms nurse email address so I’ve used it in January and got appt this wed coming, slow job… but no diagnosis. And I know nurses cant give it. Feel been left on the watch and wait naughty step…but at least can ask about where it leaves me on wed and how to manage the uncertainty. Feels like Ms, looks like Ms, so maybe it is Ms? Got positive o bands, dysfunctional optic nerve and white matter on brain MRI, but not enough for a decision it seems…thanks reading this, will be a year in may since this all started, altho similar episode 2012 which symptoms righted themselves, but these have not gone away, started lower body, now upper and face…

Getting a diagnosis for MS is not always a quick thing,I to have been a year not going to the doctors but when my double vision started. It was the optician appointment that I told her about my vision. I can’t tell you anything about a MS nurse as I haven’t been to one,so for me too I am in limboland, I have to wait until April for my appointment with the neurologist, it will be my second appointment with him and boy have I got a list for him. In turn he will have my results of the tests that I have done. Kay

Oh no, not still in bloody limbo!! Poor you.

I am sorry, it just seems like forever I’m sure. I’m glad you’re going to see the MS nurse. S/he will be a lot more useful than you think. No, a nurse can’t actually diagnose, but they usually attend the multidisciplinary team meetings (MDTs) together with the neurologist and other staff. So s/he will know the neurologist well, and may be able to help to speed up the neurologist appointment.

Probable MS is a rubbish label to be carrying round all this time. I do hope you get something definitive soon. Good luck for Wednesday.

Sue

Thanks Sue, yes that’s true, the nurses are like a go between and so should at least be able to push things on. Yes its a rubbish label, neither one thing or the other. Its only because my symptoms have gotten worse since last May rather than any sense of remitting that I am wanting to keep in touch with them prior to diagnosis. At least while I have been waiting I have been awarded std PIP, got my blue badge as I cant walk very far and managed to get back to work two days a week. That’s kept me sane to some extend, some normality. Ive been told mine is a “complex case”, which is why its taking its time, but they have ruled out everything else nearly - it does look like I may have Sjogrens Syndrome as well but my next appt with Rheumatologist is end of June, so Im thinking I may not get a definitive MS diagnosis until after that and if they are satisfied it isnt Sjogrens instead of MS, so many symptoms overlap,. I know they have to be sure.

But thanks for your post and support.

Julie

Hiya Kay, yes it does take some time it seems for some people. I hope your limboland ends soon, April not too far away

now, hope you can get some answers. I had a very long list last time I saw the Neurologist, but he is very thorough and already 90 mins behind still gave us a good chunk of time. Dont be rushed… Thanks for your reply.

Julie

Well I’m well and truly “sitting on the fence and not enjoying the view” before MS diagnosis. Saw MS nurse on Wednesday, he was very thorough, gave me an hour of his time and went through everything. He said the Consultant is not convinced enough to diagnose as my MRI scans don’t show what they expect despite other things pointing that way. Its a good thing in one way as there doesn’t seem to be progressive damage going on BUT my symptoms, including numbness and pins needles mouth and tongue, loss taste and feeling and difficulties with bowel/bladder and left eye abnormality on nerve tests dont tie up with anything else and are so difficult to live with He’s keen to keep an eye on me and they’ve not ruled out MS, just that i’m one of those rarer ones who dont quite fit. He’s changing my gabapentin to pregabalin and seeing me in May, so that is something. But more WAITING and not knowing.

Since then I have felt completely drained and conflicted. I feel a fraud to be typing on here and accessing MS centre services without a diagnosis. Its that horrible limbo feeling, pleased I haven’t got progressive damage to my brain but frustrated as I am so symptomatic. He was trying to explain away some of my symptoms, but I know that the fatigue, foggy brain, altered sensations and icy feeling in legs feet are all things experienced by people with MS and I know myself that it adds up to that. I felt like saying if it looks like a duck, walks like a duck, quacks like a duck then maybe it IS a duck. It really doing my head in. Added to that had a continence nurse appt today, saw them last year then got lost to follow up, which didnt go well either - they didnt have my notes, new nurse who knew nothing about me, both of us totally frustrated with the system, meanwhile Im retaining urine and had my 8th UTI in a year and they still no nearer even starting to find out why. So gave me forms for measuring input and output urine and other, so im going to have fun again this week doing that, exactly what they got me to do last year when I saw them last. Just no progress at all and no one joining up the dots I dont think. Useless GP surgery too last few months and I feel I now have the full set of something or other. Add depression into the mix and Im a real mess today.

Feels like Frustrating Friday. Im not really asking for anything on here, but just helped to vent a bit. Im facing a wait until at least after June as Neurologist wont look at it again until heard back from Rheumatologist who im seeing again with “probable Sjogrens” and Neurosurgeon again in April with “probable neck disk stenosis”. They are all passing the ball to each other and Im wanting someone to commit. NHS is great but this is just horrible place to be.

Thanks for reading this…

Julie

Hi Julie

To be honest, you are handling this better that some (me for eg) might. I think I’d be swearing a lot more.

Your neurology appointment sounds like it was totally f’ing aggravating. I don’t really understand. As you say walks, looks, quacks, why not call it a duck? Why the hell cant they diagnose MS? And they’ve probably got reasons, but that doesn’t help you.

Whatever you think, you are not a fraud. You are entitled to be a member of this forum regardless of your not having an official diagnosis. I count you as a duck for now even if you’re eventually proved not to be. Right now you’re not proven to have MS, but you’re not proven NOT to have MS. And that’s the important thing. (This is my opinion anyway!)

Your continence nurse appointment sounds even worse. You’d think the least they could do is look at your notes. Of course you can’t start out by having a go at the nurse regardless of how much you want to. 8 UTIs in a year is no joke either. If you have already done the gymnastics involved in measuring in and out, why be required to do it again??? Presumably, once it’s established that you are retaining too much urine, you could perhaps ask to start doing intermittent self catheterisation? That way you’d be able to at least empty your bladder and that would cut down on the number of UTIs.

You are so entitled to a good rant. Feel completely free to vent your frustration here. I’ll join you in complaining long and loud. In my opinion, it’s not bloody fair!!!

Sue

Thanks Sue, quack quack! Helps have a rant to someone understanding. I have sworn quite a bit today, very unlike me. It’s all a bit complicated, silly and totally exasperating. But what can one do. Appreciate what you said about being on here and belonging as a duck even if I’m not recognised as one yet by stupid medics. Maybe I will get a duck and call it McDonald after the potty guidelines. It helps to share, gotta joke about it as I’m trying not to slide into depressive pit. Continence thing, mad thing is I have self catheterise stuff but my hands got worse and I’m having trouble doing it. I told her this but she didnt help with any advice, just gave stupid forms. I’m meant be on holiday next two weeks, didnt think I’d be spending my time doing that. She measured my flow and said I’m retaining, dont know why needs forms again. My notes are lost between depts as was in neurology wed, ironic thing is that clinics are dead opposite each other, prob could gone found them myself…at least Frrustrating Friday is nearly over. I will preen my feathers and look for a nice pond for the weekend. Humour still intact even if everything else crazy. I am truly upset tho really, hidden behind the jokes. But thanks your reassurance.

If it helps, try a different type of catheter. Some are much easier than others to use. And if your hands feel more like wings at times, it’s worth a go. Your delivery company (assuming you get catheters delivered by a company like Charter / Scripteasy / Nightingale) will always send you sample so you can try quite a few different ones. Some I’ve likened to cooked spaghetti, and trying to thread a strand of cooked spaghetti into a straw without being able to see what you’re doing isn’t easy. Even with fingers that work.

Quack Sue (my prescription is a large gin!)

MacDonald Duck. Brilliant !

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Hi, In 2014 I was diagnosed with fibromyalgia, a diagnosis I’ve never felt fitted as I only had one tender spot on my shoulder, but I had C567 issue anyway. As part of my neck issues I was had nerve conduction studies that showed nerve damage, but these were never used. I’ve made a list of crazy symptoms to take to a private neurologist because I feel as though my GP isn’t interested. Here it’s is… No gag reflex when I swallowed gum and tried to puke it up. Difficulty swallowing (gone now) thought neck bone was out of place. Tight chest but told not wheezy. Carpel tunnel Jumping muscles/painful jerking. Shallow chest movement. Sharp pain and difficulty filling lungs. Pain in left chest/ribs/boob Hand/ feet pain Tingling side that whole body touching bed Tripping on stairs Legs shaking coming down stairs Chest pain (costochondrites?) for years. Cut bras to take pressure of chest. Using wrong words and when typing and talking (use a similar sounding word that I didn’t mean to say) Slow walking Increasing typo and texting mistakes (finger flicking to different letter) Hand shaking so much I couldn’t eat dinner Veering into wall Hip/nerve pain Neck/nerve injections ++ Carpal tunnel Nerve conduction studies showed damage. Pain in right eye/stabbing (dry eyes?) Strange feeling of weakness down whole side. Very weak arms/legs Legs suddenly lose strength Trigrminal neuralgia Flicking muscles Arm/leg ‘feeling’ maybe spasm Jerking coffee over myself foot jerking up Dropping things/ holding things hand shakes, can’t pick things up/ hands ache, feel swollen Body spasm joint (?) Difficulty making jaw work to talk (jaw closing in wrong position and slurring) Hip giving way (was it my hip?) then fine Duff hands driving me mad Dizziness I thought was neck Grease walking Blurry eyesight Pain in jaw muscles Bruising not going Bruises I don’t remember Getting up and swerving Neuropathic pain in arms lower that lead to ms Unable to wee(thought crystals) pushing makes it worse. No sensation down there. Sharp pain putting neck forward Tired always Bruising No memory- failed exam Because nothing goes in Tingling one (scared I’d had a stroke. Even face numb) Heat at work. Cold mostly brings on/garden: holidays Numb lips for a long time Pain in teeth/jaw Cramp/bunched muscle in top of arm Hot pins in Forearms 7/3 left hand skin to tender to touch. 8/3Mouth stiff and pain in eyebrow 14/3 Three days of chest and rib pain. Tingling all down one side from face to leg. Trying to sleep impossible because when I relax the muscles jump. Husband said I woke up gasping last night. Sometimes I feel it’s an effort to breathe and it’s a relief to stop. Had morphine which has taken away pain but left numbness and tingling- even one side of my nose! Head burning now. Both legs numb Over the years I’ve veered into walls and all sorts. My family and I just laugh it off, but when they chest pain and then whole one side pain takes over it’s not funny anymore and I’m concerned damage is happening. Do these seem like symptoms of MS to all you experts out there? X

Thanks Sue, I’d not thought about that, I will try find something better. Your analogy spaghetti made me laugh, perfectly right tho. Yes, vodka for me. I’m on rare eve alone, a large one I think. Quack hic quack.

Quack not quack bloody quack fair quack…

Sorry I’m a new poster and I think I’ve hijacked another thread.

Depending on what you use now, try Lofric Sense, they have a longish handle that’s easy to hold onto. They are a bit bendy, but not spaghetti. Or try Speedicath Compact, and/or Speedicath Compact Eve. Both are easy to use (even if your fingers are more like sausages). I used Speedicath for quite a long time, but now I use Lofric at home and still have a decent supply of Speedicath Eve. Lofric come in bigger packaging, whereas Speedicath (both Compact and Eve) are very discrete and just sit in a pocket of my handbag.

Sue