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Awaiting a diagnosis...

Hi, My name is Georgina. I’m probably one of the younger members around here, I’m only 17 unfortunately. So let me tell you a little bit about my diagnosis so far.
I’m currently under the neurologist for ?query? Optic Neuritis, ?query? MS.
A couple of years ago I went to the GP after I got this blind patch in my vision. It’s like a scintillating blob that moves as I move my eyes but it never goes away. The doctors sent me to ophthalmology which turned up nothing, then to child neurology which…turned up nothing. So I was discharged and had to live with the vision problem. Last October I ended up being admitted to hospital after becoming increasingly ill with headaches and nausea and my faded vision problem returning with a vengeance. I was in for 4 days and in that time I was initially suspected “Pseudotumour Cerebri” but they ruled that out and found very little. In the end I had an MRI and several ophthalmic tests which all turned up nothing once again. My lovely doctor decided on MS as a potential diagnosis in the future. I’m now under a different neurologist who is sending me for a number of test including a full ophthalmic report, a brain/orbital/Spine MRI, and an evoked potential test. that’s me so far anyway, nice to meet everybody :relaxed:

My symptoms (potentially ms related):

-Blind patch in vision

-Wake up often to severe pins and needles in limb/s that lasts about 10 minutes and causes extreme tickling uncomfortable sensation when moved, pressure applied or touched.

-Short term memory loss. Very short term with answering questions. I need to see multiple choice questions in front of me otherwise I literally forget the options and question as soon as they’re read.

-No ability to balance for 30 minutes post waking up.

-Occasional uncontrollable head and neck jerking upon waking up for about 3 minutes.

-Headaches that won’t go away with drug store medications, I often have to use Naproxen.

-Fatigue

-Brain fog

-Inability to concentrate

-Dizziness/Vertigo

Hi Georgina,

Welcome to the Forum.

I’m sorry that you’ve had so many symptoms, for so long, without any diagnosis.

It’s a common theme with neurological problems, but there are so many options to rule out before a clear picture emerges.

It seems that you’re on the right track with the new neurologist who is carrying out a broad sweep of tests. That will speed things up.

You’ll find a lot of support and experience here so please use the Forum if you have worries or concerns.

Best wishes,

Anthony

Hi Georgina,

I’m also fairly new to this and have near enough the same symptoms as you along with a zapping/electrical like prodding sensation that seems to only attack my left leg and left foot. It causes me to stumble as it goes for the back of my knee and knocks me off balance or the top of my foot.

I have read a lot on this forum from many people in the limbo land situation, so you are not alone. After 10 months of tests and scans I’m getting close to seeing the MS specialist in July. My last recent MRI showed several lesions and due to their location the radiologist believes it is MS.

I am pleased I found this forum to be able to read others experiences and know that I’m not alone or mad, which I think my family may have thought for a long time!!!

You’ve come to the right place to seek advice and support from people who know exactly what you’re going through. I hope you don’t have MS, but if you do then as I’ve learnt it’s not the end of the world although it may feel like that at the time. There are people who have had it for decades and live normal lives with some drug therapy to help them maintain a good quality of life.

xxx

Thank you, I hope you are well and on the right path also.

Hi Georgina

You are one of the youngest; I am one of the oldest; your name is Georgina (sorry I guess you know that); my name is George.

It is only a possibility but it could be you have not got MS but something called Hughes-Syndrome; see http://www.aps-support.org.uk/

Yes, MS does cause headaches but they are worse and can be constant with APS; otherwise, symptoms mimic MS.

Get your GP to do a check for APS Antibodies; ask if it is OK for you to take Aspirin. I know it is a lot of if’s; but if it is; and if you can take Aspirin that could be all you need to thin your blood; get rid of your headaches and perhaps your other symptoms.

Good luck.

George

Thanks Lou, it means a lot to know I’m not alone! I hope your specialist appointment brings you some hope/news. Stay strong xxx