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Where now? (sorry long read)

Quick summary,

Five attacks of Optic Neuritis inluding both eyes once at the same time. (Diagnosed & documented)

RAPD present in left eye and right eye (D&D)

Internuclear Ophthalmoplegia (D&D)

Abnormal Nerve Conduction Studies (Twice)

Abnormal VEP results

Lumbar Puncture results Oligoclonal bands present in both CSF and Bloods (yes I know I posted I’d never have a lumbar puncture feel like such a hypocrite)

MRI scans first scan when I had what appeared to be a Stroke showed minor abnormalities confirming CVA (Diagnosed with Stroke and put on Dipyridamole)

Follow up scan for vascular changes arranged lesion that lead to diagnosis of Stroke not present anymore (was told to carry on with Dipyridamole and will be reviewed again too make sure I’m okay before being discharged)

Seen four Neurologists in total, one privately on two occasions.

Private one points to neurosymptoms.org and said I’m making up all these symptoms because the GP referral mentions maybe a psychological cause. Had to confirm that the Neurologist made the correct diagnosis (If I knew what was wrong with me, I wouldn’t have wasted money by arranging the private referral with him) Read the website did not get back to the Neurologist to confirm whether he had made the correct diagnosis (if he was smart enough he would have made the decision at the clinic). I receive a lettter confirming diagnosis of Chronic Fatigue Syndrome (yay he did something using his own initiative obviously the invoice had to be attached the diagnosis letter no other way to invoice me)

Mentions in letter I failed romberg test and if my GP and I were happy with the investigation set, he could refer me as a guinea pig (my opinion he didn’t refer to me as a guinea pig) to one of his friends clinic who is also a Neurologist. Didn’t agree with the diagnosis and asked for a second opinion.

Second Neurologist diagnosis spasticity and weakness and recommends Baclofen (thought finally I’m getting somwhere) Had a look at my previous MRI and told me white matter disease appears to show my brain being older than it is by 35 years (as I was sat outside waiting to be seen I noticed booklets about alzheimers disease picked one up and started reading it) I left the appointment thinking damn I’ve got alzheimers disease and literraly scared at the prospect of being diagnosed with the condition because of what the neuro mentioned. Anyway follow a up MRI is arranged. MRI was done for vascular changes and was within normal limits same as the previous one.

Fast foward a little bit new development vision loss left eye, colours faded out and eye pain on movement noticed the colour loss when I was cleaning my right eye. Black was faded out with dots making it appear white. Red was also appearing as orange and faded out. Both eye open back to normal. Referred to Ophthalmology diagnosed with Optic Neuritis and was asked to ask my GP to make a referral to rule out “ms” first time I heard about the condition. I ask my GP he refers me back to second Neurologist who was apparently on holiday and did not receive my GPs letter.

Referred to a third neuro who sat down with me gave me time to talk about my symptoms and what’s been going and what my main concerns are, he asked me if I was upset with other neurologists because neuros have a bad reputation. I told him yes I am and explained why. He said I don’t blame you I do things differently and would like your opinion at the end of his neurological tests. After all my tests he said the most worrying thing is the Optic Neuritis and despite me having other medical conditions they were most likely not the cause of my ON and other symptoms. He said once he had confirmation of ON from my local hospital then he would arrange a few more tests and the diagnosis will be a demyelinating cause such as “ms”. To save me travelling back and forth he asked me if I was happy with the second neurologist I had seen and whether I would like to be seen by her entirely my choice. I made a stupid decision and said I’ll see the local neuro. He asked me if I was sure and I confirmed.

He said he would pass on his investigation results to the local neuro mentioning the diagnosis and asking the local neuro to confirm with my Ophthalmologist the diagnosis of Optic Neuritis. He must have also said something to her about mentioning my brain being older than it is.

My GP receives a letter from my second neuro confirming she was on holiday and asked her secretary to make sure she has not missed my GPs letter asking for an appointment. Apparently they never received the letter. She issued a follow up appointment and also wrote to me to apologising that she was sorry if I had left the appointment with the feeling that I have alzehimers disease.

New tests ordered VEP, MRI, and NCS, lumbar puncture refused by myself. VEP and NCS tests abnormal, MRI results within normal limits. Again the tests were done for vascular changes. I was disharged by my neurologist for failing to attend for the tests. This left me frustrated I had needles stuck in me and electricity run through me to check for abnormalities. Then I had wires attached to my head and told to stare at a tv screen. I was in the hospital from 9.00 am till 4.00 pm at around 3.30 pm I had to have a lumbar pucture which I refused. This left me chasing up with the wards I was in who confirmed I was present at hospital and did have my tests done, they asked for my neuros secretary name and confirmed with her I did have my tests done and I did not fail to attend. (this really ticked me of)

My GP received a letter apologising and was told I’d receive a follow up appointment. To this day that appointment has not yet arrived.

With the diagnosis and attack of Optic Neuritis in my eyes my gp decided to refer me to another neurologist.

I get my appointment the neuro seems very down to earth and really wanting to help, this man actually convinced me to have lumbar puncture saying if I did not have it then they will just not know what is going on with me. I asked him what if my lumbar puncture was normal. He said not to think to far ahead and leave that for the follow up appointment after he has got hold of my lumbar puncture results. Yes I have to admit I was fooled. I have the lumbar puncture and was wrote to that my results were normal and no follow up appointment will be issued despite being promised a follow up to discuss the results even if they were normal. This left me in very awkward situation GP was reluctant to do a new referral because the results of the CSF were normal. I asked my GP if he had the results as I would like a copy and he said no I don’t why they have not sent them to me.

I decided to get those results and eventually managed to get them, I took them to my GP and he was surprised my result was abnormal. He asked me what I wanted to do I explained to him I am very upset with the neuros and the way I have been treated I need to know the truth and would like my medical records from the surgery and he agreed to it. I had to pay three times to get my records because they were withholding information from me and still to this day I believe they have not provided me with my complete records.

I get home with the batch and start by going through the referral letters, I came across to remarks about my ethinicty which left me in tears. I cried for a few days. I didn’t have the courage to go through anymore letters. This created a rift and hate for my GP. I didn’t mention the letter to my GP but decided to find out the truth what is going on I went through my letters.

I found a letter from 2010 which shows I was neglected by my GP, when my Internuclear Ophthalmoplegia started again I managed to get to see a Dr at the surgery who wrote a letter to the neuro I had seen privately.

The neurologist did get back and said INO in a person of my age is caused by “ms” and the best option would be for him to take over my care from the other neurologists and that I was admitted immediately to neurology as an inpatient as symptoms are transient and can resolve quickly. He wanted me monitored but refused to make any medication recommendations as he was not involved in my care anymore. He even provided my GP with details who to ring and how to get me admitted to the neurology ward and would be more than happy to take over now.

This gave me some hope and I found documented evidence of ON and other test results based on these findings, I questioned my GP how dare he not get in touch with me or arrange for me to be admitted to hospital he said he’d never seen that letter before and now that he has he will refer me to the neuro but I insisted a private referral because there is a six month wait approximately to be seen by a neuro.

He makes a private referral I get my appointment I attend and as soon as he comes to the door and calls me in he says you again? why have you come back to see me. You know I can’t help you.

He asked me what had changed that I needed to be seen by him again, I told him the diagnosed conditions, symptoms etc.

He said like previously there is no evidence of me ever being diagnosed with the conditions I stated this time I was prepared for him. I said to him are you done is that it. I’m going home but before I go home here why don’t you have a read of these in frustration I pulled out all evidence and smacked it on the table I said here you go all these are in my head. He went through the letters and apologised but because of the way he interacted with me I got up and said I’m going home and I’m not paying you a penny. He asked me to calm down and lets discuss the finding but I told him it’s a little bit to late and I walked out on him.

Eventually this led to loss of trust between me and my GP not forwarding symptoms and mentioning diagnosed conditions failing his job. Which resulted in me being removed from my surgery.

I don’t know what to do and where to go from here. I know there are good neurologists out there. I’m not saying the ones I saw were bad, I’ve been a victim of miscommunication. As each day goes by the symptoms have started to become persistant. My paraesthesia has been active non stop since middle of 2011 which for me is not a good sign. Other symptoms are starting to become permanent and I’m afraid it’s going to be left a little to late before they really decide to do something about my condition.

Any advice or tips appreciated and apologies for going on for so long.

Wow… you really have been put through the mill havent you! I cant give you any advice as I too am stuck with a stupid GP who wont do a referral even though an Optho has asked him to… I have ON in both eyes at the moment. GP didnt even want to provide me with a sick certificate. I really dont know what is going on with GPs at the moment, but Im getting really fed up with being fobbed off with stupid answers! Ive been in touch with PALS today to complain and am waiting for them to phone me back. If I have MS, then I want to know NOW, not in 6 months time! Good luck x

OMG that is disgraceful treatment, Im afraid all I can do is recommend contacting PALS and taking it from there. I have limited experience with PALS but the problem I took on behalf of a severely disabled person and their lack of care as an in patient was dealt with swiftly.

Have you moved to a new gp who can address this with new eyes?

Pip

I have a new GP who first doubted me due to him receiving a courteous phone call from my old GP (which was most likely to cover his failings) I decided to take copies of my diagnosed conditions to my new GP. This lead to him going through my records again and he knew what I had been saying all along was true. I saw my GP last week who confirmed there seems to have been some sort of miscommunication and I would get to see a neurologist soon.

Today I received a letter confirming my appointment in June with a neurologist. I have mixed emotions I hope this neurologist is like the one I saw in Salford Royal who treated me with dignity and respect and addressed all my concerns. I have had bad experiences with 3 out of 4 neurologists. I hope this is a fresh start and hope me and my new neurologist can work out what disease is causing my symptoms. I have never been after a diagnosis of “ms” and hope it isn’t “ms” but I would like to know what is going on with my body.

I will be getting in touch with GMC not PALS, I know what the GMC are capable of doing and have used them before.

I wish you well and as June isn’t too far away a speedy resolution to all of this whatever the outcome.

You know we will be with you all the way.

Pip

Great news about the appointment (at last!). Hoping SO much that this one is the one that finally works everything out for you.

Kx