very confused

I’m new to the forum, but need someone to talk to so sorry for the long post.I had my first neuro appointment 8 weeks ago with an ms specialist, who said i probably have ms after giving me a physical examination as i had the babinski sign, strange leg reflexes and ordered brain and spine mri. I went back today and the mri are clear so he said not ms and said he didnt think it was! Which was a lie! he had lost the letter he wrote up so didnt know what the outcomes of my last visit were. He hinted that there’s nothing wrong with me but he’s ordering nerve tests???

Iv’e been left with severe fatigue, brain fog, walk and stand with my legs apart or i fall over, and i can’t walk more than 100m.

I’ve had many symptom since March this year,

it started with collapsing while out for a walk, in which i also lost my vision for a few seconds (this left me with weakness and confuion)

stabbing pains in the back of my head

pins and needles

spasms in thigh

numbness (these symptoms were all on the right side)

slurred speech

pain behind right eye

I feel like iv’e imagined all these problems and my partner says i should be happy with what he said.

What do others think

Many thanks Ann x

Sounds to me that your Neuro isn’t exactly sure to be honest. Sounds like there is something going on though with all your symptoms. The problem is there is a list as long as your arm of neurological conditions that are similar to MS. If you google neurological conditions, you get a huge list. Now, I have a some knowledge of biology, and I was lost when I tried to understand neurology. No wonder they are paid so much money! If there is a Neuro problem, they will get to the bottom of it, but it could take some time. I had to wait 2 years for diagnosis, some have to wait longer and some are ‘lucky’ and find out sooner. It all depends on how through your Neuro is, how your symptoms progress and how the healthcare system works in your area.

you can ask to see another Neuro if you’re not happy with the one you have, you might have to wait a while, but if you don’t think the one you’re seeing is up to scratch then it may be worth the wait. Don’t give up fighting your corner. Just because they have a title and a white coat doesn’t mean they don’t get things wrong. At the same time, your Neuro may be right and it may be something else? FND has been seen on the forum more than once. Have a read about that, it presents similar to MS.

Im no expert, and you will hear from others on here more informed than I am, so hopefully they can help. In the meantime this will bump you up the forum. Good luck, don’t give up and keep us posted xxx

Thank you for answering Beverly F. I was very upset and angry last night as he didn’t even know that he’d done a physical examination on me because there was no write up about his findings because he said they had gone missing! I got the feeling he was in a rush as he left the same lift as me. i will wait and see what happens with the nerve tests i think. I understand it can take a long time but i was hoping for some sort of medication to help with fatigue and some physio to get my legs moving so i can at least take my dog for a walk ( i used to walk about 6 miles a day before all this)

Do i need a diagnosis for medicaion and physio?

Ann x

Hi Daisy

You do not need a diagnosis, your gp can arrange medication for you, and refer you to a physio.

You may have to wait a while for tests, so have a word with your gp.

Pam x

Hey daisy may. I’m not sure what it’s like where you live but here,my Neuro has his own clinic separate from the hospital, it has physics etc. I self referred myself. When my Neuro was considering it,I said ‘don’t bother, I’ve already done it’ :wink: if you can self refer, do it. Find out where the physics are. If it’s in the hospital ,your GP might have to refer you. But give it a go. The physics are brilliant and will definately push your case along. Good luck, keep me posted xx

Thank you for the advice i have booked in with my gp and will let you know how things go

cheers Ann x

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i have been back to my gp and she has given me a copy of the letter of findings from my intial visit and examtion that had supposedly gone missing!

i would apprecate thoughts and explanations on his findings even though he tried to dismiss me and say theres nothing wrong! hence the confusing thoughts from earlier comment above.

Gait was slow and particulary stiff on right leg

it took 15 seconds to walk 10m

all reflexes were brisk

hoffmans reflex was present

there were crossed adductor reflexes

there was grade 4 pyramidal weakness in right lower leg

hip flexion was 4+/5

ankle dorsiflexion was 4+/5

there was right sided heel shin ataxia

both plantars were up going

thanks ann x

Hi Daisy May, that certainly sounds like he found Signs. I had a clear MRI too which led to a diagnosis of Functional Neurological Disorder. I was given the website and I found I’m being referred to neurology again as new symptoms popped up. I’m hoping they find something this time. I’ve had to push to start physio (successfully) whilst waiting for the promised CFS/ME group therapy course which was all they could offer me to treat FND. Good luck, keep a symptom diary and keep on asking for help if you need it. :heart: