I don’t know what to say or do. I feel like I’m just getting by

New diagnosis and before diagnosis
1

I am writing this with tears rolling down my cheeks. I know there are people far worse off than me but I honestly don’t know how much longer I can go on, I am a shadow of my former self. I put on a front to everyone but then when I am home my husband and my children and the ones that see the real me.

Sorry this is going to be a long one.

I have had many ongoing symptoms and tests and for quite a considerable time. I had a brain MRI done by the NHS and they reported lesions and delimitation disease and a fast track was done to neurologist.

I saw an locum NHS neurologist who was incredibly rude and not professional at all and from then I went private.

I went to see Dr Lilly at the Spire who said my examination etc was pointing in the direction of primary progressive MS but he could not give me a formal diagnosis until I had a lumbar puncture and he did not want me to pay for that privately due to the cost, he also said the MS treatment is postcode located and he does not cover me under the NHS so he has sent me back to my local MS service.

I have had a lumbar puncture which was negative and a further brain scan which has further changes but in the neurologists words the changes were not significant enough, this neurologist said it was pointing in the direction of RRMS but due to the clear lumbar he could not diagnose and sent me on my way for another 6 months. Although I have to see the MS nurse inbetween.

They now think I have had optical neuritis so waiting for this test. He said he thinks I am having migraines too so has put me on toprimate 4 x daily, I am also taking Gabapentin 300mg 3 x daily, citolpram 30mg and double dose vitamin d.

Cognitively everyday is a struggle, i constantly ache, I fall over, I’m dizzy, I have headache, the fatigue is through the roof, I stumble over my words (I sound like I have had a drink) I have muscle twitches in my legs.

I am only 42 and I should be able to enjoy my teenage children but I honestly feel like they would be so much better without me, I feel like I am holding them back, I feel like they have to make allowances for me. I really have had enough

2

We are very much in a similar situation and of similar age too. One of the worst things for me and maybe for you too is knowing something is wrong but not quite sure what it is. It makes it hard at work and hard for other around you to understand. Luckily I have a good support network but they really don’t understand the helplessness sometimes. Even a simple thing as stroking my daughters cheek does not feel the same anymore. Don’t give up and keep advocating for yourself to get the answers you need and the help you deserve :blush:

3

Hello CSHE. I feel for you - very much so. Becoming aware that you might have MS is a horror. I’m not sure that MS treatment is postcode related but I’m thinking that getting diagnosed, MRI scans and appointments with neurologist varies from place to place ( from could do better to ‘needs to improve’). In my case, my first experience of the consultant neurologist was along the lines of …. Why have you come to see me? It’s turned out that he is OK but I think the problem was two fold : too many cases and not enough consultants and also - bedside manners are or weren’t high in the list of training for medics .

From a quick check is see that Gabapentin and Toprimate both have some relatively common side effects which might explain some of the things you are experiencing. Have you spoken to the Nurse about these?

To begin with Citalopram also has some side effects - tiredness etc including trouble thinking.

I’m no medic but the combination of all three drugs must have quite some side effect!

Optic neuritis was my first obvious symptom of MS - I had a full examination of the back,of my eye and apparently where the optic nerve enters the eye it is visibly inflamed, which can lead to headaches ( I didn’t have any pain but lost pretty much all vision in my right eye).

I’m hoping that with your optic neuritis and possibly a further MRI you soon get a diagnosis!

I’m totally sure that your family wouldn’t be better off without you!