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Rainboweyes

Should I ask for treatment ?

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Alienated
Rainboweyes

Hi all you lovely people.

I've been reading on a few forums for quite a while but been to scared to join or ask any questions.

Please feel free to tell me if I'm doing anything wrong I'm not at all good with technology !

In 2017 I started to experience numbness in my right leg and foot  and my face .

The feeling in my face returned within a few weeks but unfortunately Its not been the case with my leg and foot.

My foot feels rubbery and you could quite literally stick needles through my toes without me feeling anything .

This obviously has a impact on my walking and affects my balance quite alot.

I've experienced vision problems , mainly blurring but the most recent ,last year losing the colour red .

I experience bladder and bowel problems and extreme tiredness. 

I've had a lumbar puncture which was clear .

My MRI showed 4 lesions but the other one they do , is it spine or something ?! was clear of lesions .

After a few appointments with a neurologist ( 2 ) she diagnosed probable MS .

When I asked about treatment I was told No as I dont have MS and do not fit criteria. 

I've not seen a neurologist since but have had more symptoms .

when I've been taken to hospital for other things Drs have looked in my notes and said I have MS .

I'm so confused.

Id to ask for treatment but need my facts right first .

Oh also vital point 18 years ago I had quite a big incident with my sight , I needed to have my baby early because of this . 

I had an MRI of my head where they found a few lesions .There was talk then of MS but I was young and didnt like what they were saying so never went back .

I'm so sorry for the stupidly long message.

I would just like to know , would it be reasonable for me to ask for treatment?

I dont want to deteriorate any more .

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Crappy
Marina

Hi Rainboweyes and welcome to our forum!

 

Please don't be sorry for your message, it's no longer than many of mine! :flowerface:And you've not done anything wrong, you've even managed to add a Mood for yourself, which is great.

 

Technically, only a neurologist can give a diagnosis of MS. It's totally understandable that you're confused: one neuro tells you have "probable MS" and and then a doctor tells you have MS.

 

When you were in the hospital where the doctors said you have MS, did the hospital do another MRI? Would you know if it was a neuro in the hospital who said you have MS? When they said you have MS, did they say which type, eg: Relapse Remit or one of the Progressive types?

 

If you can have confirmation of a definite diagnosis of MS, then a neurologist (preferably one who specialises in MS) or your GP should be able to refer you to an MS nurse who'd be able to discuss possible treatments with you.

 

If you haven't got confirmation of a definite diagnosis of MS, might you be able to go to your GP and tell them about the doctor's note that says you have MS, and ask if this confirms the diagnosis? If the GP says it doesn't, could you maybe ask for a referral to an MS specialist neuro?

 

If you can get to see an MS specialist neuro, they should normally do another MRI. Often, when it's difficult to diagnose MS (which happens often), neuros have to wait some time and then do another MRI to look for differences in or new lesions.

 

To find an MS specialist in your area, go to the link below, and put a tick (dot) in "Hospitals with MS Services", and enter your postcode or town in the box where it asks you to.

 

map%20of%20ms.png
WWW.MSTRUST.ORG.UK

Use our map to search for an MS service that is near to you

 

Please feel free to ask as many questions as you like, many of us have been in what we call "Limboland", sometimes for years (myself included), so we know what an uncertain and/or scary time this might feel like for you, so we're here for you.

 


Marina

(belated DX in June '05, SPMS)

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Alienated
Rainboweyes

Thank you very much for your reply Marina .

I've had a repeat MRI and luckily enough there has been no change since my last MRI which is good but doesn't explain my new symptoms or problems not improving .

The Drs referring to me having MS weren't neuro Drs they were a ophthalmologist , AE drs , and ward Drs .

I was asked by a Dr in A&E what treatment I was on and when I explained I wasnt  because it's only ' probable MS' he couldn't understand why and said to me I should speak to my neuro .

I was originally given a MS nurse (This was arranged by my neuro) but I've not seen her for over 18mths and shes not made any future arrangements to see me .

She could of been quite helpful now to get an appointment with my neurologist or communicate between us at least .

It's so frustrating and tiring. 

Thank you so much for letting me rant :) 

x

 

 

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Procrastinating
Stumbler

@Rainboweyes , Doctors aren't that helpful when they intimate that you may have MS, yet they're not Neuros. It doesn't really help.

 

In your circumstances, the Neuro may give you a diagnosis of Clinically Isolated Syndrome ( CIS), which basically means that you've had a neurological event, which doesn't quite fit the criteria of "Multiple" Sclerosis. This may go on to develop into MS and it may not. Some proactive Neuros will treat CIS with Disease Modifying Therapies ( DMTs), to try and prevent progression to MS, and the conservatiive Neuros will not, preferring to wait and see.

 

Unfortunately, the NHS still has a lot of cracks for patients to fall through. Then we have to be our own advocates and make things happen. So, use the link that Marina provided above and to locate and contact your MS Nurse directly.

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Alienated
Rainboweyes

@Stumbler yes yes this is exactly what the neuro said to me , well actually she didnt.  She barely said two words to me but she put it in a letter to my gp .

I just couldn't remember for the life of me what it was .

This all happened in 2017 and since then everytime something happens from falling over , balance problems , vision problems , extreme tiredness im automatically told this is part of MS 

I'm just confused because I dont have a diagnosis of MS so surely they cant keep saying this to me .

Also I've read that

Some  Neuros will treat  CIS with Disease  Modifying Therapies (  DMTs), to try and prevent progression to MS, I'm hoping to ask in my next appointment.  

Whenever that should be .

Thank you for your reply ,its really appreciated. 

 

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