Hello and waiting

Hello I am new here awaiting a firm diagnosis. I have been told after a lumber I am boaderline devics/MS.
My story so far It all started with an episode of ON in left eye last year was treated as a one off incident after an MRI was clear.
Then march this year left eye 2nd episode of ON so an MRI (clear) and neurologist referral. Then in the mean time may this year 1st episode of ON in right eye.
Since may my feet started to go numb and the pain in my upper back was unbearable and the numbness spread up my legs and i get this tingle feeling when I flex my head downwards … its a sensation which goes all down my body.
Neuro did the the pins/reflexes tests and decided it could be devics not MS and went onto order a blood test/ spinal MRI and lumber punch.
Blood test came back negative for antibodies for devics.
Spinal MRI came back with inflammation in certain sections.
Lumber Positive and the bloods taken at same time positive (which is not common in MS)
They atre baffled as to which way to treat so now being sent to a specialist in Bristol to see what they think.
Iam not sure if this is conected but my bowels have got worse i have had an actual accident and near accidents. Spoken to GP and says at this stage we can not say if its connected to MS etc or just a bit of anxiety due to awaiting diagnosis and has reassured me immodium is fine to take . Hopefully this is correct.
Well my appointment is not till dec in bristol so just waiting to see how this one goes.
Ohhh and fatigue is just so overwheling at times simple things just wipe me out …
Any advice etc much appiciated
Thanks for reading

Hi Sue, and welcome to the site :slight_smile:

It can be a confusing and frustrating journey to get a diagnosis :frowning: None of the tests are definitive - they just “suggest” things but don’t rule things out or in for sure. As a result, there are an awful lot of people going through what you’re going through :frowning:

Problems with bowels is common in MS. It’s often constipation or a lack of response from the necessary muscles, but some of us get terrible diarrhoea which can be uncontrollable. Imodium can help a lot with that. A surprising number of people with MS have also been diagnosed with IBS.

Fatigue is often the worst symptom of all :frowning: There is a drug called amantadine that is licensed for MS - it helps some people. The other drug is modafinil, but I just heard the other day that neuros are now not allowed to prescribe it for new users - which is terrible news as it works wonderfully for some. There are booklets about managing fatigue on this website and on the MS Trust site. They are free to download & to order. The most important things about fatigue is to not overdo things and to rest before you get too tired; also prioritise your tasks (housework is NOT important; eating is). Most of all - forgive yourself for not being able to “pull your weight” and do what you normally do. It is absolutely not your fault!

Best of luck in Bristol in December - let us know what happens!

Karen x