anxious123 24/05/17
Last reply 9 months ago
Feel stuck in limbo..

..no diagnosis which i wouldnt mind but my symptoms are constant and intruding on daily life…i now have constant fatigue, brain fog, numb legs ( varies throughout day) numb dominant hand and headache with nausea…i appreciate the neuro needs to get right diagnosis but really nothing else it could be.

I feel i need to be on dmd asap…but thats going to be at least 6months off..

Besides taking the recommended vitamins eating right should i be taking painkillers etc and is there anything for the nausea??

Honestly feel as though i am going to have to give up work 🙁

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stumbler
9 months ago

@anxious123 , Neuros have a few alternatives they use, when a diagnosis of MS can’t be justified. Terms such as Transverse Myelitis and Clinically Isolated Syndrome (CIS) are used. That is, until another relapse occurs which allows the MS diagnosis.

You might want to have a read through the following thread, which contains some links, which suggest that a treatment should be considered if a progression to MS is considered likely.

Is CIS a type of MS?

It may be a useful discussion point with your Neuro.


anxious123
9 months ago

Thanks he has diagnosed cis and booked me in for lp in aug and repeat scan in sep but only wants to see me if these confirm ms. Otherwise he has given me a follow up in one year !
He said he will refer to ms nurse so maybe i will talk to her and see if she can recommend something for symtom management and advise if i need to get another apt with neuro asap…


ashory
9 months ago

Easier said than done but…… Stress less!

Whether it is MS or not stressing out is only going to amplify symptoms.


stumbler
9 months ago

@anxious123 , some Neuros are very conservative in their treatment of MS, whilst the new philosophy appears to be to “hit it hard and hit it fast”. This latter approach aims to minimise damage caused by MS, using the strapline, “time is brain”!

Read the BMJ link in the post above and ask your Neuro what his view is on it.

It has been said many times that we have to be our own advocates, to ensure that we get the right treatment, at the right time………….


anxious123
9 months ago

I am going to try and arrange another apt…


kateybash
9 months ago

Anxious 123, I too feel the same as you. I feel so overwhelmed being in this position with horrible brain fog, burning pins and needles like a torch most of the day and dizzy, lighthead feeling. I had many lesions but a negative LP. I have been off work which is adding to stress. Apart from MS there doesn’t seem to be any other causes. I feel so low as these invisible symptoms are playing havoc with my life! Hope you get answers soon. I have written loads of questions down for my next appointment in June. So hard to wait. Good luck x

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