Last reply 1 month ago
optic neuritis

So abit of an update after my last post. Ms nurse said my symptoms have nothing to do with my ms. Had my mri scan. Got a letter today to say optic neuritis is back, which is associated with ms. Rang my ms nurse and told her, her reply was so its not a new relapse, see you in 3 months!!!!! Getting abit disheartened with my nurse as I only got diagnosed in march so its all still abit new to me. Anyway whinge over, everyone have a good day. X

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stumbler
1 month ago

@coralellis , I wish these medical people would brush up on their “bedside manner”. They should be into caring, not adopting an alternative attitude!

Our symptoms can jump to the fore when we do something that upsets our MS. This could be working too hard, getting stressed, eating something that upsets our MS, etc.. We have to “listen to our body” and react accordingly.

Any infection can cause our MS symptoms to flare up too.

Just don’t over-worry or stress about things. You just need to become pretty laid back……..


itsmewithms
1 month ago

I know just how you feel! I had a hip replacement about 2 years ago. In this last month I have awful foot drop on that side and the top of my thigh is numb. I called in to my MS Neuro and because this is due to the lateral femoral cutaneous nerve which isn’t part of the central nervous system he says it is due to the hip replacement…the Neuro EMG they did said everything is “normal”…say what? I can’t walk! so my MS Neuro will redo that test on Thursday. Hopefully we get to the bottom of it but each side is saying “Not my issue”. My MRI of the brain shows no new lesions.

There is a lot of new research to show that where the lesions are matters. Spine vs brain lesions and that the impact can be seen before the lesion is visible. https://multiplesclerosisnewstoday.com/2017/06/27/ms-multiple-sclerosis-patients-walking-is-getting-worse-though-his-mri-is-stable/

So- while it is important to press on and get answers it is also important not to stress out! right…easy ;-0…just realize that stressing can just make it worse and do what you can to get to your happy place. Read a book? visit with a friend? watch a movie? and in between all that find your answers…


itsmewithms
1 month ago

My Optometrist also does a special look at my eyes in each visit as he says there is something special he looks at for disease progression and he can see visible signs of MS in my optic nerve. He is very good and also did my lasik surgery.

MS was suspected for me when I was pregnant and they couldn’t do MRIs so instead I had a battery of Visual Field Tests. They seemed really silly at the time but the map they showed me afterwards of where my blind spot was were uncanny. Exactly the size and shape of the missing part of my vision. The spot returned to normal in my third trimester. Apparently this is also common and why they are investigating if the hormones of 3rd trimester can resolve MS symptoms.

If you haven’t had a visual field test you may find some answers working with an optometrist that is trained in this and has the equipment I went to the U of M in Minnesota 15 years ago but my eye doctor repeated something like it with more modern equipment recently http://www.mayfieldclinic.com/pe-visualfieldtest.htm


carolyn_jameson
1 month ago

I had a botox on my bladder and I swear I’m worse than I was.My doc said that with my ms it would help.But I’m going more and getting infections.would someone out suggest what I should.


silvana_hansen
1 month ago

@carolyn_jameson What was the reason for the Botox? I self catheterise due to a retaining bladder. But this has caused multiple UTIs. Four this year so far and each time I get prescribed antibiotics. Neuro Rehab said I should get referred to Urology. But my GP says that all they could offer is surgery which may make things worse and that there is nothing wrong with being prescribed antibiotics. So at the moment I agree with him. He says that UTIs are common with catheterising, despite my cleansing routine.


nutshell88
1 month ago

if the relapse got repeated its not entirely new its the scar in the brain got worse in same area but this nurse deserve to be out of her job thus relapse is one of the main ones and needs a serious therapy i never call ms nurses i call neurologists straight away


coralellis
1 month ago

I am a pretty laid back person so its takes alot for me to get stressed, but I seem to be getting more stressed lately!
I think I have sussed 2 things that I need to avoid; cheese and late nights!!!!
My eyes have been bad for 3 weeks now hopefully they clear up soon as not allowed to drive untill they do and I cant afford to keep getting taxi’s eveywhere.
Anyway thank you all for your comments, its does make me feel more relaxed knowing I can ask you guys for advice and a whinge. X

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