Trying to find if have ms

New diagnosis and before diagnosis
1

good day to all , i am struggling due ti lack of support from my doctors surgery.

My struggle started a few years ago when things just changed not even sure why but many things over a period of time and as a result was told possibly fnd functional neurological disorder although my own doctor felt it was ms. Moving on over past 6 years several things have changed the main ones are constant pain,periods of numbness and tingling around body some short spasm type events which you can visibly see like skin pulling in etc. My mobility has gotten very bad can’t walk too far and ache all the time i have balance issues fall over a good few times. I have pain in upper legs and hips i walk slowly.

I get the feeling of crawling in head and body sometimes legs, my toes don’t really move now except big ones i was told just this morning that i may suffer from a dropped foot the physio has now referred me to neuro physio.

Worst things are i lost my sight which is normally very good i don’t wear glasses except for reading rally small print but this was a total loss for about 10/15 mins my son and daughter had to take me to sit down was really weird was sent to ophthalmology who done test for my eyes and all fine.

I have been getting really bad lower back pain now take to hospital 3 times now in extreme pain last occasion i had full spine mri which showed lower protruded discs and a lesion just above them . All this on top of my memory getting worse now struggle to mind short term things and i guess confused as things like name getting mixed up.

On top of all this in past year or so sex has been a no go lacked even before but cannot get full erection even trying viagra just nothing,

i have a appointment with a neurologist in 4 weeks first one in 7 years but i feel this is not fnd but ms and just not sure what to do.

i know there are many symptoms and although i don’t get them all all the time there are several i do fatigue , mobility, aches and pains along with the cold/hot numbness and pins/needles.sorry if going on getting confused to what i have already mentioned or not but wondering between the loss of sight the lesion on spine and the dropped foot along with other bits if this could be ms. on top of this if not enough just been diagnosed with coronary heart disease and have had stents already put in. just feel a bit down that no one here to help with getting over what is happening to me thanks

2

Hello Brian

When you were diagnosed with FND, had you seen a neurologist and had neurological tests, MRI, LP, VEP etc?

If you had, and there was no evidence of MS, then the neurologist would probably have been right in diagnosing FND at that time.

Meanwhile, seeing a neurologist again, you perhaps need to have a really clear picture of what has been happening to you over the years. What might help is a timeline or diary in which you can attach dates to symptoms. You could think back to when symptoms have occurred, detail what has happened with those symptoms: have they changed, improved, got worse? That will help you to fully explain your situation to the neurologist.

Ultimately, it’s finding a way to be very clear about your recent history for the neuros benefit. That way s/he will have a complete picture and be unable to just rubber stamp the previous FND diagnosis.

Best of luck.

Sue

3

thanks for that, the answer as to mri etc when first diagnosed is no. I didn’t have any just a meeting with neurology.

i have been keeping a kind of track of events with summary doctors record showing times attended hospital etc and tests.

the problem of where i live and the local doctors surgery doesn’t help for instance i have saw my doctor twice in 2 years and normally get passed off to nurse or simply told just take more pain killers.

i know things myself have changed considerably and so has my family so will i guess just have to wait to see neurologyst soon and see ehat they say. If anything atleast i do have some test results which may or may not help.

thanks again

brian

4

I honestly don’t know how a neurologist could diagnose you with FND without doing more tests than a physical exam (I assume s/he did at least do that?)

Hopefully this time you’ll perhaps have more understanding of your own symptoms, about the diagnosis of FND and the tests that could (maybe should) be done to properly investigate your condition.

Sue

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