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Pre Diagnosis, symptoms and help!

Hi,

I am new to the site and new to MS. I am waiting on a full diagnosis, but it does seem very likely that I will receive the full MS diagnosis. I have been going to my Doctors for over 2 years now with several symptoms that have been brushed off and ignored. At times I have been made to feel that I am a hypochondriac and have left the Doctors in tears several times due to the feeling of not being listened to. I have been hiding (badly) my symptoms to my family as I feel that they have become tired of me saying I feel ill everyday.

I went to the opticians for my yearly check, good eye history previously except for floaters. The optician told me I needed to be referred urgently to specialist as my optic nerve was showing signs of damage etc. I have 2 different sets of glasses and have to go back every 3 months.

It took 5 months for the referral and I finally saw a neurologist a month ago. In the appointment, which I very nearly didn’t go to due to thinking it would be a waste of time the specialist told me that he is 75% sure I have MS. He told me that i would need an urgent lumber puncture and further tests would follow, but the lumbar puncture was required straight away … 4 weeks on and I am in the dark! I haven’t received an appointment as they have a 3 month waiting list. I am phoning weekly to chase and am being made to feel like I am wasting their time.

My symptoms are: Pressure Headaches, fatigue, mood changes, triple vision, chest pain (i have been going to the Dr’s for 2 years about this, had heart races and all clear), dizziness, tiredness, hot and cold flushes (unable to maintain a normal temperature), tingling in the left side of head, speech becomes slurred and my voice goes very low and quiet when tired (mainly in the afternoon), confusion, nosebleeds. I have bowel and stomach issues and also have a fair amount of UTI’s. Pain in hip (have had steroid injections, but not helped). My eye sight is getting worse fast, I work at a computer all day and really struggle from lunchtime onwards. I have spent the weekend with a headache and spent last night with a patch over my eye, it even hurts when my eye is shut and i move the right eye.

I have been diagnosed with having optic neuritis and intracranial pressure. MRI has come back clear. I have a fatty/blood mass on my spine (diagnosed a year and a half ago, but no follow up done as they didn’t think it was a problem).

I know the NHS is overstretched, but I feel like i am in complete limbo and panic about what is happening to me. I have had an MRI and this is clear, I have had the evoke test and am waiting for results. I am still waiting for a date for the lumber puncture that has to happen and I am waiting on an ophthalmic appointment for my vision.

Does any one have any suggestions on how I can get things moving, what is the best route for me now? Do I just sit back and wait for appointments or should I be more pushy? I am really scared of how I am feeling and it seems to be getting worse quite quickly now, I am holding down a full time job as a Business Manager for a very busy business, but am really struggling to go in and do a full day at the moment. I am so tired of feeling ill every single day and really try to not show it!

Also, in regards to the mass on the spine does anyone else have this and could it be a link to MS or the pressure?

All responses and thoughts would be gratefully received and much needed!!

Many thanks!

Kate

keep on phoning the receptionist.

so what if s/he is getting pissed off, you are more pissed off with waiting for the ‘urgent’ lumbar puncture.

it seems to be the case that those who shout loudest get heard.

it is worrying that computer work is making your eyes worse.

you may need a sick note for a couple of weeks?

get shouting and be pushy!!

I’m sorry you’re going through such awful symptoms.

I am most concerned about your visual issues as eyesight is an irreplaceable sense that must be protected.

My advice would be to contact the Patient Advice and Liaison number at the hospital where you’re expecting to see the eye docs and emphasise to them that your optician stated it must be an urgent appointment and that your vision is deteriorating. Be blunt with them and ask what you should do if you lose your sight by the time an appointment comes through.

You can also look up Eye Hospitals which have an ‘eye casualty’ facility. I don’t think there are many compared to ‘regular’ casualty depts but they will see you for assessment regarding your vision changes and eye pain.