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New boy waiting diagnosis

Hi everybody. I have been going the the long and tedious process of getting a dx. Waiting now to see neuro in Nov. Have optic neuritis in both eyes that isn’t clearing up as well as general weakness and tiredness, pins and needles in both hands and feet and very persistent vertigo and headaches. Brain mri is clear apparently and now just have to see what neuro wants to test next!

Hello David & Welcome,

so sorry to hear you are having a bad time of it at the moment. Hope things improve for you soon, at least November is not to far away then you may start getting some answers. Are you having treatment for your eyes?

best wishes

Janet

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Thanks for the welcome Janet. No treatment at present. The consultant said that steroid injections sometimes helped but not always. I guess I just have to get used to it? Regards David

Hi David, I disagree with you, you shouldn’t have to put up with it. Have you seen an Opthomologist, if not may I suggest you do as quickly as you can. Pay a visit to your gp and ask for a referral. Do keep us updated and good luck.

Janet

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Good morning Janet. I have seen 2 ophthalmologists and neither of them felt any treatment was appropriate. The last visit ended with him deciding it was more appropriate to pass my case over to the neurologist. So I guess that was progress of a sort? Regards David

Hi David,

I’m rather surprised that you weren’t even given steroid drops, or oral steroids. Well I wish you all the very best and do let us know how you get on. Remember you are not alone and someone will always respond to any questions you may have. Sorry I haven’t been much help to you.

Janeht

LOL. Can’t even spell my name

Janet

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Hi Janet I wouldn’t say you haven’t been much help! You are the only person to have welcomed me at all. Thanks for your contact it really helps just to have come out and admitted where I am at. Neuro appointment not until 6th November but that is not to long to wait. Regards David

That’s a long time to wait with your eyes as they are, n 2 ophthalmologists wouldn’t help either. I agree with Janet you should see your gp and ask for a quicker referral, I did that n got a appt with the neuro the next day.

good luck x

Lost all power in my voice a couple of times this week. Anybody else had any experience of this?

Hi David, I’m currently waiting on a second neuro opinion after gaining ‘possible optic neuritis’ and involuntary movements. After an MRI that came back ‘within normal limits’ I was given a diagnosis of Functional Neurological Disorder (ie the nervous system is obviously faulty but we can’t see why) and Chronic Fatigue Syndrome. 11 months after my first neurologist mentioned CFS course as a treatment path, I’m soon due to actually start it.

I have occassionally opened my mouth only to find that my voice has gone quiet, but when I try again it works normally. My body seems to be glitchy! I also have weakness and dizziness that’s nothing to do with my ears (ENT specialist checked). I’ve been looking for answers for about two years, how about you?

Hi,

(and welcome - this is a quiet board sometimes so we dont always get many answers to our posts:-))

I dont have much to add - except I had suspected ON in Dec last year and am still firmly in Limbo so I do get your frustration… I know that they don’t tend to offer oral steroids as research has shown them to worsen ON. Sometimes they offer IV steroids, but it seems often not.

The voice thing may be some weakness in the muscles of your voice box, but not experienced it so don’t know for sure…

Leah :slight_smile:

Thanks to both of you. I am seeing a neuro tomorrow evening so I guess I will just add this to the list of symptoms I have to show him. Regards David

Had a good meeting with the neuro. He took me seriously and is scheduling spinal scan and electro tests. David

Sounds like youre getting some good care, great to be under the neuro and him taking you seriously, hopefully these next tests will bring some clarity!

David, if you do not mind me asking, what is your age? Also, why did you say ‘brain scan is clear apparently’ or am I a suspicious person…

Good luck.

Hi jos. I am 57. Apparently is just a figure of speech. Neuro says scan normal for my age