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Lost confidence in so-called MS support

It took 2 years to convince me that yes I really did have MS - although a part of me still doubts the diagnosis.
Always being advised to contact MS Nurse if anything changes, new symptoms etc, so against my better judgement I did ring them for a callback this week; and (predictably) she said “it doesn’t sound as though your symptoms are MS related, suggest you go see your GP”.

On the couple of occasions I have mentioned symptoms, they have either been brushed off as a pseudo-relapse (wtf that means!) or dismissed as not relevant. It wasn’t so long ago that they were pushing Tecfidera, now it never gets mentioned. It just reminds me why I’m not sure I believe this dx and why I don’t like speaking to her. I would like to have found out if the results from my recent MRI were back yet but as they’ve not been in contact re an appointment, guessing nothing new showed up on the scan. Yet another reason why I don’t believe what they tell me.

So back to self-medicating then.

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That’s awful, when did you have your MRI? Often takes weeks to get results.

You’d think the MS nurse would be a little more sympathetic, however not all symptoms are MS related so if I was you I’d go to my GP and explain symptoms then they may refer you to the neurologist.

Otherwise I would phone the neurologists secretary and make an appointment to see the neurologist to discuss MRI

Hope symptoms dont last long.

Jen

The words ‘pseudo-relapse really pish me off. I agree, wtf is that meant to mean? As for ‘not relevant’, what the hell is supposed to be relevant or not?

I’d be inclined to phone your neurologists secretary to ask about results from the MRI scan. If there are new lesions, you should be on a DMD. No question. So perhaps push for an appointment with your neurologist to get some sorted!

Meanwhile, it sounds like self-medication is an answer!

Sue

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I had the same with my MS nurse. she was also trying to push me towards Ocrevus and see neuro and at the time it had been refused by NICE, so much for her keeping up to date.

2 times I rang her worried about something, it doesnt sound like your MS, yet when i finally spoke to my neuro last week he said it was.

gives you little confidence. the only good thing is she got me an appointment to see the incontinence nurse as I am struggling with my bladder, which since the heat is even worse.

I shant bother ringing her again, she was about as useful as a chocolate t-pot.

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just feel like a moan today SORRY.5 months ago had bloods taken prior to starting Ocrevus and whilst with the ms nurse and numerologistwho was sat in the room I asked if they could also check vit D level(as on 4000 units daily and neurologist told me to carry on with higher dose) ms nurse was going to request this but neurologist said no you dont need it. Well been feeling at bit off went to GP and asked them to check levels and they phoned me to say Vit D too high and kidney function a bit low . Ocrevus infusion in my opinion is not monitored closely enough and you really have to follow your own instinct and look after yourself and ask .

My MS neurologist always pushes for high Vit D3 levels, “the higher the better”, he’s said a few times.

I’m on 5000 iu daily.

My GP thinks this is too high but rather than refuse to prescribe that dose she keeps telling me to ask MS clinic if I should still be on that dose after 6 years.

The MS nurse told me to drop it to 2000iu daily but consultant said put it back up.

Kidney consultant nearly had a black when he found out the dose I was taking after developing kidney stones.

Haematologist said 5000iu is high but its imperative that ANYONE taking extra Vit D, at any dose should also take Vit K (MK7), as it helps the body use the Vit D the correct way, otherwise it gets absorbed into tissues, such as the kidneys, hence kidney stones.

So 5 different specialist’s and 5 different responses.

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Thanks jactac wish someone had told me earlier (preferably the neurologist who keeps saying stay on higher dose)

Anyone taking a high dose of vitamin D should have their blood tested to make sure they aren’t taking too much.

Vitamins are still drugs and should be treated as such.

Our neurologists and MS nurses often recommend certain dosages of vitamin D, but it’s also important that your GP knows and tests your blood.

Sue

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Totally agree with Ssssue.

Vit D overload is not good.

Well got letter from Neuro today re MRI scan; think you have to have a medical terminology degree to understand it! But I think the gist of it was that there is no new disease activity in CNS - which is ‘good news’, but then does that mean my symptoms are down to old damage… or am I just imagining it…??? Arghh!!!

To add to the confusion, in a conversation with MS Nurse on the phone, she said she “didn’t think my symptoms sounded MS related”, so referred me back to GP for tests etc… Had blood test to check for arthritis, came back clear. GP thinks my symptoms (apart from frozen shoulder which is a separate problem) are MS related - neuropathic pain. All GP can recommend is upping the Gabapentin which is fine overnight but not sustainable during the day.

I know many of you here will probably say listen to MS Nurse, but to be honest I have more faith in my GP than I do her… how she can come to a conclusion in a two minute phone call I don’t know. I’m sure she is there to weed out anyone who shows signs of wanting to see the Neurologist so puts them off by telling them what they are experiencing isn’t MS related.

So GP is convinced the pain I’m experiencing is Neuropathic and MS Nurse isn’t. At this point, I don’t give a toss who is right and what is causing the pain, I just want some relief from it. Where do I go from here…?

When do you next have an appointment with your neurologist? I wouldn’t trust your MS nurse necessarily - if she’s insistent that something is not MS, when both you are your GP are certain it is, trust your instincts. But really it sounds like you need to see a neurologist for help.

Sue

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,

Nowhere. You go nowhere. because you are going nowhere anyway.

sorry i am fed up of MS nurses, and GP alike to be honest. I go to GP with a certain pain its always my MS. I go to my nurse its always not my MS lol.

I went and saw the rare spotted warbling nuero last month after THREE YEARS with no support.

I had no medication, no support, was told in 2016 I had PPMS and I went to see him finally, and he said I was dealing with my MS exceptionally well was kind of proud of me, and obviously i had sussed out my own way of dealing with it, because hey at this stage of the game and my age there was no where to send me. I am not going to get ocrevus, although he didnt actually say it, i knew he meant it as i have had it too long, I am above the EDSS score.

Basically there is NOTHING for me accept all these drugs designed to make you feel weird and like poop and some are now being banned or taken off the market or people are becoming addicted to them.

so I will see him again in a year woo hoo. So i have read more and am now going to start a plant based diet. I believe the best way to deal with this crap disease is to to treat it with kindness and love lol, and feed it well.

No point in fighting it as its stronger then I am, but i can help the symptoms.

NERVE pain is a bummer, the brain is confused so it decides to give you the weirdest stuff, I sometimes think what i see or watch it copies ha ha. I know bizarre right. I read someone has a pain in their arm, i get a pain in my arm, or my hands, etc etc. I know hey dont worry i am not loosing my marbles lol, but really the brain is a very odd thing.

it is full of stuff it has been coping with all your life, and i am convinced it draws out experiences to chuck at us lol.

Yesterday, for me was a great day not. I was supposed to see the small ops unit as i have in growing eyelashes so i was seeing consultant about how to best move forward with coping with them. the phone rings at 8am its the booking office, awfully sorry but we have to cancel as the consultant has rang in sick and the clinic has been closed. UGH all that planning weeks of waiting gone down the tube.

so how does my brain reward me, by giving me something else to worry about. OUCH pain in my back, suddenly inexplicitly pain in my back like a wrenched muscle, agony. then just as i was getting used to it, it chucks in stinging nettle pain all around my stomach and a numb foot for good measure. I ignore it, and manage to get up to eat my healthy meal. then later as i am sat watching HOUSE on amazon lol, more stinging nettles all around the tops of my legs.

this morning its all gone, and the pain in my back is on very low. for the moment.

I find no matter what it chucks at me, it just cant sustain it for long so chucks something else lol.

right its early going to catch an another episode of HOUSE, and give the old brain cells something else to think about lol.

In all this writing what i am trying to sort of say as i have brain fart again, is after 3 years of no support no nothing, i am still here lol. xxxxxxx xxx not long it will be xmas. xxxxx

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