Help with results please

New diagnosis and before diagnosis
1

Hi Everyone,

sorry in advance im just at a loss where to turn, I will try to keep it short with a little background

symptoms started March this year when I randomly lost my sight in 1 eye after 4days 50% of sight had returned now around 80% returned

i have had numbness in back of head for the lay 2yrs (I was told due to childbirth)this has gotten worse and worse over the last 6months has become painfull and constant

headaches that can be crushing, banging, squeezing, stabbing and again constant. Has recently driven me to tears they are so painfull-I am not stresses and have tried changing diet.

Severe dizziness again 6months got so bad I collapsed and passed out twice

Numb all on 1 side came out of the blue scared me quite a little GP brushed it off still numb (although moveable) but very weak on whole left side onc face!

Painful neck into my ear comes and goes can cause me to wince and stay for a few days then go has recently progressed into the other ear also on occasion.

Extreame fatigue

Ears ringing constantly

painfull arms and legs

tight chest constantly

poor concentration

insomnia

no co ordination constantly dope things and trip

weird burning smells following me around

slurred speach (my boss asked if I was drunk)

constant constipation (sorry TMI)

so I went to GP and got sent to neuro. Neuro sent me for a brain scan. The n the following day I got a call asking for an emergency optic MRI.

Mo just received results. All looks of discharge to GP treat for migraines. So why an urgent eye scan? Even the receptionist was confused if results of initial scan was clear

Does this mean 100% not MS? I’m at a loss and I feel like I should give up as GP just says learn to deal with it. I know I should be relieved but I thought it would answer some questions

I have 2jobs 3small children and can’t keep going with this level of pain. What would you do now? Can migraines come on out of nowhere (no history in family at all) and just stay constant for months on end? Has anyone else had this and then been diagnosed with MS or similar?

Mo am not a constant GP visitor but have been around 6times this year so I don’t think I am a hypocondriac I am not anxious or depressed.

Hope you can help.

2

Hi Sammy Lea,

What would I do now?

Hope to God they’re right, and give it a decent go with the migraine treatment. If it helps, question answered - they were right.

What do you have to lose by trying?

Tina

3

Hiya, your symptoms could well be migraines. I would accept it and try and get on with life. Hope you get relief. KatX

4

Thank you for replying.

I completely hope they are right what Im finding hard is the idea that I will have these symptoms for the rest of my life and my GP says there is nothing I can do. I have tried the migraine treatment nothing works!

this is why I wondered if anyone else has been diagnosed with similar and still got diagnosed with MS or similar after? Also would you ask for a MRI of neck and spine?

Thanks again

5

If the consultant has specifically referred you back for migraine treatment, I can’t imagine your doctor would refuse to try it.

There must be more than one migraine treatment, How long did you try it for, and have you tried several, or just one?

To be honest, no, I wouldn’t keep harping on about MS, if you had no clinical indications of it, or, at the very most, had brain changes consistent with migraine (I believe some types of migraine can cause MRI abnormalities, but to a trained eye, they wouldn’t be confused with MS lesions).

In the unlikely event you had MS lesions in your spine alone (rare, but not impossible), they couldn’t be causing your main symptoms, which are almost exclusively, head, face and eyesight.

A spinal cord lesion only causes symptoms below the site of the lesion, so it would be totally pointless to have a spinal MRI to determine why you have head pain or visual disturbance - it could not cause these.

I have to be honest, I’d have given my eye teeth (and more) to be told it didn’t look like MS, and the conclusion was migraine. I’m sure many here feel the same.

Sadly, there’s no chance of that for me any more - I’ve been diagnosed five years. The evidence was clear, I know in my heart it was right, and there’s no chance of a change of diagnosis now.

But if you’ve received news it doesn’t look like MS at all, hang onto that for all you’re worth. Go back to the GP, and say that since the verdict was one of migraine, you really do need help to find a successful treatment for this. Migraine is not curable, but it’s not untreatable either. The NHS website even says there are specialist migraine clinics, so I’d guess you’re a long way from trying everything yet.

Tina

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