Frustrated rant

I have had multiple attacks of ON since 2010 I have documented evidence of these from the ophthalmologists. The letters from my visits to the eye clinic confirm that my optic disc was swollen and rapd was present in affected eye, I also have internuclear ophthalmoplegia which causes my left eye to drift sometimes with nystagmus. I also have double vision sometimes with ghosting. What I’m so frustrated about is that the neurologists I have been under the care of three in total were never notified of these findings by my GP. Yesterday I suffered from a very scary episode I tasted nearly 100% complete blindness I could not see any colours at all from my right eye I could only see darkness with diminished light. I was in tears yesterday. For the first time as an adult I’m scared of what could happen next. Why do these people not care and leave things to the last minute. I was under the false impression my GP was a good one. I have since changed Dr’s twice and hopefully the new ones when they get my medical records will refer me to a neurologist with all the relevant information. I lost hope yesterday was very down and considered giving up chasing answers. My mood is now better and I will work with my new GP to try and help me get some answers. I wish and hope nobody has to go through what I have experienced. Regards M

hi m

sorry to hear of the awful time you’re having.

you really need to go and see gp rather than wait for your records to arrive at the surgery. your sight is very important and you may need steroids?

your gp really should have notified the neuro with all relevant info and ON is definitely relevant.have you had a mri , did it show anything?

what other symptoms do you suffer with?

i think it may help others to help you if theres a bit more info.

this site is really great for support and i know it will help you.

please do give your new gp a ring and make an appt asap they may even tell you to go to a and e.

try to have faith in yourself even when others dont as its your body and its obviously trying to tell you something.

lots of love mandy xxxx

hi again

im sorry ive just re read and realised you weren’t actually asking for help, you just wanted a rant!

hope you’re ok but please do make an appt with gp.

love mandy xx

Glad you’re feeling a bit better today.

I hope the new GP gets something DONE now!

Hang in there!

Karen x

@rizzo thanks @mandymary I did have an MRI scan done but it was requested for vascular changes. I did request are looked at again for ms and on nerve demyelination. The radiologist wrote back to apologise because the scan was performed for vascular changes it wouldn’t be a prudent idea to check for on demyelination or ms as certain sections of the scan had been left out. I had abnormal vep results also I have had abnormal NSC/EMG test results once in 2009 which were abnormal. The secon one in 2011 had reduced amplitude which they could not explain. After refusing a lumbar puncture for over a year I agreed to one under X-ray guidance. The results were inconclusive because I had the bands present in my serum and csf. Systemic inflammation was on the results sheet. Since then I’ve seen a rheumatologist and haematologist and they have ruled out systemic inflammatory diseases. I’ve been discharged from the rheumatologist telling me that it is most likely ms. I am still under the care of the haematologist but will be discharged if my abdomen ultrasound is normal like it was before. He also suggest my symptoms are suggestive of ms and a neuro should consider a diagnosis because they can’t find anything in blood and other tests they have performed. I’ve had neurological symptoms since I was about 20 I’m 35 now. I thought they were related to my other conditions. It wasn’t until 2007 when I suffered from a bout of vertigo that I decided to chase up with GP. Ive suffered from vertigo, balance problems, pins and needles, incontinence, constipation, muscle jerks, spasms, walking like I’m drunk not knowing where my feet are going, not being able to grip items in my hand due to loss of sensation, double vision sometimes with ghosting as well as symptoms mentioned in first post of this thread. I don’t have all of them at the same time the shortest symptom free days I’ve had are three and longest being over a month. I do appreciate your advice this past Monday I had some bloods taken to see whether I would be suitable for steroids or not. Thanks to everyone for there kind words. Regards M

hi m

wow you’ve had a really bad time of it, it is annoying that you have to keep going around the houses to try and find out whats wrong, you’ve had it for so long they’ve had more than enough time to put all the pieces together. i dont understand why the docs never seem to look at all of your symptoms together over a period of time and just check to see if there could be a link.

i do feel for you i thought i had it hard enough being ill for 7 years but you must feel like you’re going mad!

i hope that you can get the steroids and that they work for you and send you lots of love and best wishes.

i really hope someone sorts it all out for you soon…

mandy xxxx