Last reply 1 year ago
Can I ask for some advice?

Hello All,

I have been having various symptoms for some time, but intensifying over the last 18 months. During this period the symptoms have become more specific and the bouts defined and pronounced enough to be referred to the MS consultant. This consultant seemed to understand everything I was describing and didnt seem to want to pass it off…he rolled his eyes when I explained that tone GP had diagnosed some of the pains/ weakness/ and tingling along/ with poor coordination and poor balance as a ‘muscle virus’. At this appointment the consultant indicated that my symptoms were certainly consistent with MS ,but that he would need to ru through the tests. Anyway a few months later, having had the MRI scan and subsequently a letter from the consultant stating ‘non-specific findings’, but that we need to discuss the results… I have an appointment 27th June.

I now find myself having another bout of the symptoms/relapse- I am in day three and they are getting more pronounced etc etc.

So do I let anyone know? Do I phone the MS consultants wonderful, amazing, secretary ? Do I tell the GP? or do i shut up and tell the consultant at the appointment. I am keeping a diary of exactly what is happening.

I know some folk get allocated an MS nurse even though they have not got a definite diagnosis. Do I ask for this so I get some support. I know resources are stretched..and perhaps better spent on folk who have been diagnosed!

I have a very understanding family, and my daughter who is a trainee clinical psychologist has worked with MSers has been particularly supportive. Errrgh…getting psycho’d by your daughter is a bit weird..LOL !! Role reversal !!

Tell me i am being over fussy or silly…or jumping the gun..and i will happily ‘hud ma wheesht’

ET

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rebecca_vaughan
1 year ago

Hiya, I think you should definitely tell the ms nurse of the symptoms that your experiencing, while you are going through the investigation stage it can be very stressful, I remember on this stage I was relapsing quite often through being stressed, but for some reason after telling the ms nurse of your symptoms you may find yourself feeling a little bit better/less stressed. At this stage your better off trying to keep yourself calm and not panic about what may happen, I’ve had ms for 12 years, I’m 35 and I’m only now using a stick and sometimes my mobility scooter, I was scared when I found out but I don’t think it is that bad now, you sound like you have a good support network around you and that’s good, try and stay positive, calm and accepting. I hope you start to feel better soon, try not to worry too much, relax 🙂


stumbler
1 year ago

Hi @pikilily , you can locate your local MS Nurse using this website:-

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


pikilily
1 year ago

Hi stumbler, thanks for replying. It appears that the MS nurses here only see patients with “written referrals from GPs and other health professionals for people with an established diagnosis of MS and under the care of a consultant neurologist within NHS Tayside” so I think the lack of an established diagnosis will exclude me.

Never mind!
ET


pikilily
1 year ago

Thanks rebecca.
I dont have an MS nurse. and it looks as if I can only get one AFTER diagnosis.
ET


rebecca_vaughan
1 year ago

Have you had MRI, lumber punch or any of the investigations yet?


lilbird
1 year ago

If I were you @pikilily I’d call the wonderful amazing secretary ☺ I think I’d feel better knowing someone was aware of my situation & could make an informed decision on my needs as the situation develops. I think it’s a peace of mind thingl Keep up the diary for future appointments as well, it’s amazing how easy it is to forget things that you’re sure you definitely won’t (could just be me but I suspect not) Best of luck, hope you get some answers soon! 😊


stumbler
1 year ago

@pikilily , there’s no harm in calling up the local MS Nurse. What’s the worst they can do?

Nothing ventured……………


lilbird
1 year ago

Good point @stumbler they’re not likely to hang up on you are they 😊


pikilily
1 year ago

@rebecca, yes i had an MRI which shows non-specific results. The MS consultant did say, (at our pre-mri appointment) that he might send me for a LP depending on the results. I am a bleeder ie.i have a platelet malfunction, this was a concern for the MS consultant…however my haematologist has since made a plan for tranexamic acid therapy prior to any possible LP.

LOL @stumbler and @libird that’s true, I can handle a knock back… and I am all for a venture!
ET


cameron
1 year ago

I suppose the point about pre-informing the consultant about your symptoms would be that it might save time at the appointment, leaving more time for discussion. Realistically, unless you are in an emergency situation with your symptoms (am talking A and E, steroids), nothing much is going to happen before you see the consultant, is it? Doesn’t sound as though the GP is much use at this stage. I think what I would do is ring the secretary and ask if it would be helpful to send the consultant a brief symptom diary ahead of your appointment. You could say that you’re worried you may need an intervention before this appointment and that the GP is not inclined to prescribe before you’re seen. If the advice from the secretary is not to give the consultant any prior information, she will likely tell you to go the GP and/or A and E if you’re really worried. You could then use this as a stick for your GP to get some action if things continue to deteriorate. Whatever happens, I do think that keeping a symptom diary is a really good idea – it clarifies things and enables you to talk coherently at a medical appointment. BTW, when this happened to me and I was prescribed steroids by the GP, I later found out that the dosage was tiny – nowhere near what was required for MS. Just saying – I’ve discovered GPs (in my neck of the woods) know a lot less about MS than you might think. Best wishes and let us know what happens. xx

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