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Help around pre-diagnosis/ diagnosing MS

Hi all.

This is mt first post and my first time visiting this site. I’d come here for some help as I am stuck in the limbo stage of diagnosis and the longer I wait, the more worried I get.

January this year, one day out of the blue I began to feel “drunk” while at work. I felt my vision blur and I began to develop double vision. Over the course of a few hours the room had began spinning round. I was just about able to make it home. I had a nap when I got home, but I woke up worse than before. I couldn’t see properly with both eyes open, everything was spinning and I thought one of my eyelids had started to droop. I had a mild headache, so thinking that I was getting a migraine I took painkillers and went to bed. I woke up on Saturday morning unable to walk in a straight line, i had double vision and I had developed a pretty terrible looking squint. I took myself to A+E where a neurologist working in A+E diagnosed me with Internuclear Ophthalmoplegia and 3rd nerve palsy.

I was admitted to hospital for 1 week and over that time I was given IV steroids. The neurologist told me that the symptoms could be caused by MS but they would need to conduct other tests. My blood tests came back positive for Lyme disease - but the head of disease prevention said this should be treated as a false positive given how rare the disease is in Northern Ireland. Nevertheless, I was treated with a high dose of antibiotics anyway to make sure. I was given MRI and ct scans of the brain and spine which indicated a small lesion on my spine. I was also given a lumbar puncture test which I was told I had to wait on the results. After a few days my eyes went back to normal, the double vision dissappeared and my balance returned and I was able to be discharged from hospital.

Since January, I have felt completely normal again, if just a little bit shocked. The neurologist has been fantastic in arranging follow up appointments, blood tests and mri scans. The results of my lumbar puncture test came back completely fine apart from the ogliconal bands? which indicated an infection somewhere. The general impression the neurolgist gave me was that he was still suspecting MS, however I had no other symptoms and my bran scan was clear. He told me the problems with my eyes could have been down to the sinus infection I had 2 weeks prior and I was to have an MRI again just to follow up. He said my INO could be just a clinically isolated event which may never happen again.

This week I received the results of my follow up MRI. The small lesion on my spine cannot be found, but instead the MRI has shown 2 lesions on my brain which weren’t there before. At the appointment, my neurologist said that I should prepare myself for a diagnosis, but that it still may not be MS. He said that some drs would diagnose me with MS there and then, but some of them would like me to have another symptom of a recurrence of the same symptom (in my case it was INO) which then would confirm a diagnosis of MS. He has told me he will discuss my case and hs referred me on to an MS clinic for specialist discussion. The reason I am looking advice is because I am feeling absolutely horrible at the minute because I feel like I am stuck in limbo between wanting to feel hope that it is just a vitamin deficiency and willing it to be MS so that I can be treated early. The neurologist said that what they don’t want is more lesions to appear.

I feel shocked by this all and totally terrified. Ive just started a new job and Im worried about everything. To make matters worse, its been 3 days after the appointment and Ive been feeling like one hand has been tingling all day. I feel like a hypochondriac and I feel stupid. Is it likely given the evidence that I do have MS? How long will it take to find out if I do? Is my neurologist worried about telling me and being wrong? Should I want to be diagnosed? Should i get early treatment? What else could it be?

I just am so ready for this roller coaster to end crying

Hi MissMishell

im so sorry you find yourself in this awful situation. I was diagnosed back in April but have probably has MS for 20 years! I do know that the Drs like to have 2 separate episodes before they make a diagnosis which will explain your wait. If it is MS then you will be able to start some disease modifying drugs soon which can significantly reduce the risk of relapse. I am now t the best person to give you further info as my knowledge is limited but I’m sure someone else will be along soon

julia xx

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Thanks so much for the reply Minstrel101

I’ve read on MS websites, that some Drs will diagnose MS with one attack if there is other clinical evidence, such as lesions on an MRI. Others generally want to wait until there are 2. I know it sounds silly, but dont feel like I want to wait for a 2nd one if what happened in Jan was an attack. I want to know now because I am terrified of it happening again and its making me feel awful. Ive completely lost my appetite this week and it’s all I can think about.

Ive been referred to the MS clinic - do you know how long I’ll have to wait?

Michelle x

What area do you live in?

[quote=“Minstrel101”]

What area do you live in? [/quote]

Northern Ireland

Hi MissMishell, I am in the South and I too am awaiting news. I am waiting a year for an appointment with a Neurologist.

Doesn’t bode well. Are you able to go private for the initial appointment?

It was an ophthalmologist who first noticed there was an issue, I had lost colour in one eye and had visual field issues. I tried to obtain a private appointment but the year is as good as it gets. I have fizzing in my feet and what I can only describe as electrical charges moving across my. Loads of other stuff going on too, I have never experienced depression like I had in the last week.

I actually feel lucky to have a diagnosis! But seriously, you may need to fight for it, or pay for a private initial appointment

I would pay no problem, my GP jokingly announced what they thought I had last November which knocked me for six. When I phone his surgery with symptoms I am told to present myself at A&E !

Well sometimes A&E is the way to go, cos they will medicate your symptoms, if needed plus you get on the diagnosis treadmill a lot quicker. I went to the eye hospital in Jan this year, was MRI’d a few weeks later then diagnosed in April

julia xx

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Thank you for the advice Julia, I shall try to summon up the courage.

Do please read up about Lymes its horrendous, believe me i have a co infection of it alongside my MS, and some days i never know which is bothering me.

Lymes can have lesions on MRI as well. It really is a horrible disease and hides if it goes chronic.

It can screw up lumbur puncture too, if yours is showing infection (my blood did alongside the o bands), and it can trigger off other things. It can screw up your vision too.

It might be rare in norther Ireland but its epidemic in UK, and if people are travelling with animals in and out, and they have ticks it will spread.

My Lymes screwed me up and it took 10 years to get a diagnosis of MS because of it.

This is a brilliant web site to read up about Lymes.

My blood tests i had in america showed i had met Lymes at some point and that the test were indicative of a co infection but i was never sure what, as i couldnt afford any more testing. I do notice though that i am totally intolerant now of certain antibiotics which is a nuisance, and not only that weirdly enough please laugh, on a full moon, i get sore lesions all over my back like shingles, burning urine, and a spike in my temperature. Otherwise my temp runs low, around 35.7/36.7. Weird lol… I did google full moon and lymes and believe it or not it came up a lot of people with lymes are affected by the full moon lol…

Hi all, thanks for the replies. Ive been cleared of lyme disease so far. Dr’s are saying my test was a false positive, however Ive read a lot online about how it can cause symptoms that can last a lifetime and the symptoms are all neurological in nature and extremely close to the symptoms of MS.

I have to say, I really cant complain about appointments or my neurologist or the care team - I dont think going privately would get me seen any quicker. Well it might, but its not something I could afford.

I took myself to A+E with Internuclear Ophthalmoplegia and was in hospital for a week and was treated with both steroids as suspected first attack or MS and antiobiotics as a precaution for Lyme disease. During my weeks stay I had 2 MRIs of my brain and my spine) and CT scans with and without dye, a lumbar puncture, extensive blood tests, detailed eye tests and follow up treatment of antibiotics and steroids. Since Feb (basically over the last 7 months) I’ve had a further MRi tests, 2 separate neurolgist appointments at the hospital, evoked potentials testing (which came back normal) eye appointments and testing plus more blood tests. I think I’ve actually been quite well looked after considering how long some people have to wait :slight_smile:

How I left the hospital apointment last week was the neurolgist telling me there are now 2 lesions on my brain found in last months MRI scan, that he that he was going to discuss my case with an MS specialist, that I should “prepare myself for diagnosis” but that he wasn’t going to absolutely confirm it, and that I will get a letter in the post referring me to the MS clinic which is in the other hospital. I just really hope it wont be an extremely long wait. I dont think I could cope waiting few months for the letter. I already feel anxious and worried.

When you get your appointment, you could ring them up to try and get seen quicker if the wait is long. I would hope that they’ll see you sooner as the bulk of the tests have been done already

julia x

Thanks all for previous replies. I have been diagnosed with MS today. Not really sure how I feel about it. MRI came back with legions on the brain but then 3rd MRI was clear. However have had symptoms of tingling, numbness and other sensory symptoms so unfortunately this has lead to a diagnosis.

Michelle

Hi MissMishell

so sorry to hear this the but it’s been pointing that way since the start hasn’t it and it’s taken an age to get the diagnosis! The good thing though is now you can crack on with treatment, if needed. It’s not all bad and there’s loads you can do for yourself. I recommend you get “Overcoming Multiple Sclerosis” by Professor George Jelinek. We get this free at my hospital and it’s worth a read.

Julia xx

Hi It has unfortunately. And while I sort of knew it would go this way there was always hope it was just an infection, or something else. I will certainly look up the book. Its taken so long as they couldnt diagnose without another symptom… mris alone were not enough and the fact theyve cleared up again wouldnt have supported a diagnosis. Was a big shock today still. Will manage :slight_smile: thank you

If it’s of any help, my symptoms clear up too and I have no problems apart from tiredness. I know that this could easily change but I try to live for the moment …

julia