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HI I am hoping that someone will be able to help. My sons girlfriend lives with me she is 17. She became quite poorly and had a short spell in hospital. She lost feeling and power first in her right side and in her left side.

this is often really bad, but comes and goes in degree but is never not symptom free.

She has had a MRI scan that shows splattered white mass in her upper spinal cord and cerebral

Doctors are saying that it looks like MS

She has become quite destressed at times

She gets bad chest pains as well

at times she gets some feeling back but then it will get worse esp when tired

she is having to use a wheel chair when out of the house

often can not manage the stairs

can not shower unaided or dress herself

all i get from Gp is waiting on nuro appt

last night her breathing was affected

i am really struggling to support her because i have no real answers

is this normal for someone who has MS to see symptoms come and go like i said she is never not numb but some times she can manage around the house to walk but not strong on her legs and often has to move around on her bottom

hoping that someone can point us in the right direction and what i need to do as far as getting a firm diagnosis either way

and is it normal for symptoms to decrease and increase

and is it normal for chest pains

she also has raynards

thanks for letting me off load

Hi there,

Oh dear, she is young to have such problems! (I don’t mean in any way that this is unnatural or abnormal, or means it can’t be MS - it can strike at any age).

It is common for symptoms to be quite variable. Many people find tiredness, stress and heat are all things that tend to exacerbate symptoms.

I am NOT a doctor, but it’s quite probable the chest pain is something colloquially known as “the MS hug”. MS tends to cause muscle spasms - could be any muscle - but when it’s the tiny muscles between the ribs (called intercostal muscles) it can cause chest pain and a feeling of tightness or constriction. At 17, it seems very unlikely it’s any sort of heart problem, and much more likely a muscular thing related to her presumed MS - nevertheless, chest pains should always be reported.

It is possible to treat symptoms, even in the absence of a diagnosis. IF it’s accepted the chest pain/breathing difficulties are likely a type of muscle spasm, muscle relaxants might help. Frequently prescribed examples are Baclofen and diazepam (I take both of these).

However, if she (I don’t like to keep saying “she”, but there is no special word for a son’s live-in gf) already suffers from muscular weakness, there is a risk that muscle relaxants may worsen this, so it’s all a bit trial-and-error, and finding the right balance. Some people get on great with muscle relaxants - no problem. I am one of those. But I did not have particularly severe weakness in the first place. Stiffness/cramp are among my worst problems, so anything that helps the muscles to relax tends to ease those symptoms.

I’m afraid diagnosis is often a long and drawn-out process - not because of foot-dragging, but because it’s a very difficult illness to diagnose, as there’s no yes-or-no test.

It can only be diagnosed by a specialist MS neurologist, and even they may need a long time and a lot of evidence before they’re certain enough to diagnose. Some people have just a single MS-like attack. Because MS is multiple by definition (it’s in the name), it usually cannot be diagnosed unless or until it happens again.

So I’m afraid there’s not much you can do to hasten things. A GP certainly can’t diagnose, so you are dependent on the neuro appointment, and even he (they’re mostly he) may not be allowed to diagnose on the evidence so far, however much he “thinks” it’s MS. There can be a big gap between what they think, and actually being able to prove it - which takes a long time.

All you could try is emphasising to the GP how bad she is, in the hope they can use a bit of influence to speed up the appointment, or perhaps grab a cancellation if one becomes available.

I’ve absolutely no idea of your circumstances, but I’ll mention it in case: you could consider seeing a neuro privately, which is usually much quicker (and often the same person you’d get on the NHS anyway), but usually of the order of a couple of hundred pounds.

As she has already had an MRI scan, you would not have the expense of that (as long as it can be made available to him), but if he orders any more, it would almost certainly be back to the NHS anyway, as they typically cost several hundred pounds, putting them beyond the reach of most ordinary people, unless they have health insurance. At 17, I’m assuming your son’s gf wouldn’t, but it’s just possible she is employed and has cover through work. I don’t think many 17-year-olds do, but I’m mentioning everything, just in case you realise: “Oh yes, she might have!”

I don’t think she would be covered under any sort of family health plan, because she’s technically not a relative.

I think perhaps you need an assessment for some practical help for someone who cannot shower or dress themselves (she is probably entitled to benefits in respect of this, as well).

You might want to talk to the CAB, or perhaps try the MS Helpline (number at top of page - though I don’t think they’re open weekends), for advice on who to contact, and what help (financial or other) might be available.

Hope at least some of his has helped,

Tina

x

Thaank you Tina that is so very helpful

Her name is Abi.

WE would not be able to afford to go private sadly.

I know that you used to have to had been poorly for 6 mths in order to qualify for benefits help.

But will look in to it.

I am just hoping that she improves even just a little.

she is going to try to go back to college this week, They have been great putting in support for her but it is not going to be easy

She had several ECG’s while in hospital to rule out heart ]probs so it is prob the muscle spasm you talk about that are causing the pain and breathing prob that will i hope reassure her it does me

The hospital asked that nuro give her a urgent appt but who knows when that will be

sorry to hear of abi’s health problems.

she is very lucky to have you on her side.

sounds like common sense but even the most sensible people still ignore their own health when they are caring for someone.

so do look after yourself. give yourself time off chores. take naps whenever you need one.

abi will need to get into the habit of napping too.

good luck to you both xxxx