Hi Everyone,
My first time posting on here. I have had a rollercoaster of a journey so far.
I will try to keep it brief
My difficulties started 8yrs ago when I blinked and list the sight in my Left eye. This lasted 2 days and I was diagnosed by a GP with migraine.
Around 2months later I once again lost my sight. In my L eye. After3 days I called my GP and got the new locum. He diagnosed me with potential optic neuritis and sent me to the eye clinic, us a neurologist referral.
While waiting for the referral I lost the feeling in the left side of my body, I could walk with a limp but had no feeling. I was taken to hospital for an emergency MRI told they could see several lesions 3 on my brain and 4 on my spinal cord.
I would need to wait for my neurology appointment.
I had my appointment and he said they would watch and wait.
Fast forward over the next few years I have another 5 bouts of optic neuritis (now lost partial sight in 1 eye) plus other more minor problems and 2 new lesions.
My last neurology appointment he stated that he is diagnosing me with CIS and I will be discharged. Fast forward another year, I have been struggling with swallowing, I was diagnosed with indigestion and reflux, however symptoms got so much worse and I couldn’t swallow food or liquid. So sent for a manometry.
So now have a diagnosis of Achalasia. I am awaiting the treatment to reduce my symptoms.
Looking into Achalasia it is an autoimmune condition and affects the nerves in the throat/stomach .
My question does anyone else have this condition and MS or do you think I should ask to once again be referred back to neurology to see if the dots line up?
Thank you to everyone that took the time to read my story so far.
Syd
Good grief! How did they come up with a dx of CIS when there seems to be nothing clinically isolated about it? From what you say your medical advisors aren’t exactly being proactive. In your shoes I would want a second opinion from an MS specialist neurologist. If it turns out that you do have MS, and I hope you don’t, you need to get on some disease modifying drugs to get on top of it.
Alison
Hey answering your question:
“…does anyone else have this condition and MS or do you think I should ask to once again be referred back to neurology to see if the dots line up?..” well…impresed i’ve got after i finished to read all the story given. This because i know those syntoms …the one in the eyes…the Retrobulbar Neuritis is one of the first symptoms pre MS. and the new one for me but similiar with kind of manifestations …is the ACHALIA, the problems with my stomache i feel are this case evacuation of internal gases. you should ask one again to be referred back.
Thanks for share your story…hope my experience be useful.
Please find new doctors! Their treatment of you is irresponsible and inexcusable. You need a new neurologist immediately.
Good grief i had to read it 3 times. I had a WHAT THE HELL moment when i read your descriptions.
How can you be diagnosed with CIS and Achalasia (new one on me). You have progressed over time, with more symptoms of eye issues etc, I would think they would say to you a differential diagnosis of MS and achalasia and start treating you as though you had MS.
I dont get it really. Retrobulbar Neuritis is a good one to start with as you hd so many incidences of ON. I was diagnosed with MS THROUGH 2 VEP tests one in 2007 and one in 2015/16 both with increasing slowling of brain to optic nerve. MS.
I had ON on and off without sometimes being aware. the onset of ON can be linked with PPMS. which shows differently to RRMS.
You had spinal lesions and slow onset so it could be that is the culprit not that i want you to have any type of MS but really its crazy. LIKE MY SO CALLED MS EXPERT SAID TO ME i think you have Functional neurological disorder, but i havent READ YOUR NOTES. when i get to see your notes i cann then confirm your diagnosis of FND.
What a hoot, he wrote to me about 3 weeks later hat in hand very subdued. sorry i cant give you the diagnosis of FND as seeing your tests results over time i see you have active symptoms…FND should show NO NEURO SYMPTOMS…stupid man.
anyway are you in the UK? Usually when you go into hospital you would be referred to a nuerologist at the time of your visit. I saw 2 when i was taken in a few months ago.
Jeez I would not accept this to be honest. I would want to talk to an MS team or nurse someone. they can still treat you as though you have MS my neuro always did as he told me i know you have it, just got to have that one last piece of the puzzle to give you a diagnosis, and he did with my last VEP.
Hi Everyone
Thank you all so much for taking the time to reply.
The neurologist I saw is the MS specialist and sadly I cannot afford to go private.
He did actually allow me to visit the MS nurse years ago when he initially said I had MS but then I was told CIS doesn’t qualify to see the nurse.
I had a LP which was normal which was the basis of his final diagnosis.
At the time I questioned him. I asked if I do not have MS what else could cause the difficulties I am having? His reply was that we sometimes just have to live with the cards we are delt
He wrote to my GP and said I could be sent back I I have any new and different symptoms .
However he will not see me as I did mention the swallowing difficulties on my last appointment before discharge, it is therefore not new but has obviously processed into Achalasia and now needs an operation to stop my choking.
I guess I could ask my specialist treating my Achalasia to refer me?
Its crazy as of course I do not want MS or any serious condition of course but I definitely know something is happening and not working correctly 
Thank you for your support Everyone
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That really doesn’t sound very satisfactory - I am sorry that you don’t seem to be any further forward. I hope that you have a good GP, and all I can suggest is that you get an appointment to sit down with him/her and review where you are, what you know, and where you go from here. I wish that life were a little easier for you, really I do.
Alison
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Dumb American here. Is there really no way to get a different neurologist under NHS? If the government is footing the bill, shouldn’t they just require any one of their doctors at any authorized location?