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Suggestions please - next steps!

Hi

It’s my first post on here and I’m looking for some advice please.

I’m as yet undiagnosed but had 2 appointments with a neurologist with a specialism in MS. I’ve had an MRI which didn’t show anything and am awaiting nerve conduction tests.

I first noticed symptoms 7 months ago as follows

Numb extremities
Electric shocks all over body
Strange headaches (and I don’t normally have any headaches -although I did have hormonal migraines which have stopped several years ago)
Intermittent dizziness which feels like being on a boat
Extreme fatigue

Things have progressed by me losing my balance, being clumsy and bumping into things and brain fog. I’ve started doing 30mins of gentle yoga every morning to help the body work and to help with my balance (it’s definitely doing something!)/

I’m on 40mg of Amitriptyline which has helped with the electric shocks.

The neurologist thinks I don’t have MS but is continuing tests, but he’s also mentioned fibromyalgia.

The complication at the moment is that I started a new job just as this all started and now I’m struggling with it. They’ve been really good so far, spacing out my shifts so I can rest in between. But I’m particularly struggling to retain all the information that I need to learn and recall it as necessary. I absolutely love this job but I’ve now been referred to the occupational health team.

So that’s where we’re at! I don’t want to lose my job and I do want to know how to make the journey forwards better.

Any suggestions welcome. Thankyou in advance.

Hi LouB I to have not been diagnosed, I have a second appointment with the neurologist in April. With me he said that I do have demyelinating like legions in my brain, one of them. MS has so many different symptoms that what you have is different than mine, also lots of other illnesses have the same symptoms and have to be ruled out before the neurologist will even think that you have MS plus he is the only one who can say that you have MS. As you have been told that you haven’t you can be sure that you don’t but I think he is giving you some more tests to make sure. You haven’t said that you have any more tests or that you have had other tests. They usually have a blood test to rule out other illnesses plus a lumber puncture from your spine as well as a MRI. They like to have a full health history with some physical tests. Also if you had shown some legions in your MRI, they like to see two legions before they say for sure that you have MS. I have been taking amitriptyline 50 for many years I think you have the blue ones I take the yellow ones. So if that is the case the electric shocks you so you have I don’t because of the pills.(maybe) Or at least a back and brain MRI with contrast which is dye that they inject into your arm. One symptom that most people have is eye problems I can’t remember the name but it’s very painful and you can go blind, another is double vision and this is what I have I have had it for at least eighteen months and is being controlled by a prism in my glasses. I am sorry that I can’t help you with anything more. As I can only talk about my symptoms and the tests that I have had. All the best. Kay

Hello Lou

When you’ve had an MRI which ‘didn’t show anything’, you’d expect that the neurologist can be fairly confident that you don’t have MS. But there are times when this isn’t necessarily true.

Occasionally, the only demyelinating lesions are in the spine, so if you’ve only had a brain MRI, it’s possible you could ask for a spine test, just to be certain. Then again, the neurologist is an expert on MS so if he says it’s not, then very likely it’s not.

Nerve Conduction Tests may help the neurologist give a definitive answer. Obviously as Kay said, a lumbar puncture is a frequent diagnostic test for MS too. It’s not a complete answer as only 80 to 95% of people with MS have a positive LP.

One of the biggest problems with MS is the sheer number of symptoms that are shared with other diagnoses. Added to the fact that what I experience with MS may be completely different to the next person and you can see why it’s so blessed difficult to diagnose.

Fibromyalgia is one of those diagnoses that shares symptoms with MS, so if that’s been suggested, then it could be the answer.

I do feel for you with your job. What a dreadful time to be having health problems. I can only suggest that having problems retaining information could be slightly ameliorated by keeping notes on the job. Every time you do something new, write yourself a map of processes or notes on steps to take (depending on what the job is). And try to repeat that new task fairly soon after the first time, again if that’s possible.

With regards to Occupational Health, not yet having a diagnosis makes life a bit tricky I think. I’m by no means an expert on the subject, so I’m unsure whether ‘reasonable adjustments’ come into play when you are being tested but not diagnosed. Maybe someone else who is more informed than me could advise? It does sound like the organisation have been working with you on managing fatigue etc, but it may be that you’ll need to see what OH say and what you can arrange to help you keep the job.

Very best of luck with both the diagnostic process and the job.

Sue

Hi Lou,

It’s the worst part of any Neurological complaint; you obviously have something wrong but can’t find out what.

I’m going to put another possibility that perhaps you could discus with your specialist? That is a complaint that mimics MS symptoms but can also cause strange headaches called APS; STICKY-BLOOD or Hughes Syndrome, see http://aps-support.org.uk/

As far as your job is concerned; if you need help contact ‘Access to Work’ lots of help available. I’m thinking like helping with fatigue they can organize Taxis to pick you up to go to work; another to bring you home, you only pay the public transport fare.

Your company should be pleased with this as any infrastructure or furniture improvement AtW pay for not your employer. You do not need to be diagnosed to get this. Get support in work if you have a disability or health condition (Access to Work) - GOV.UK

Good luck

George

Hi George I’ve noticed that you have mentioned APS in a couple of posts now and I’m wondering whether you have any additional experience/knowledge of this specifically? I’m still in limbo with regard to an MS diagnosis; had lesions in cervical spine and brain stem on 2 MRI’s and positive evoked potentials but no O bands in CSF although there was raised protein level. Told by neuro that he suspects ‘mild’ MS (I didn’t realise there was such a thing and it doesn’t feel particularly ‘mild’ to me!) and will rescan and see me again in 6 months. Unfortunately when I had my most recent neurology appt not all of the LP and blood results were back, however I have since received a letter from the neuro where he advises that there were anticardiolipin antibodies at a level of 69 in my blood “which may indicate APS but will need a further blood test in 12 weeks to see if these are still present and will discuss APS further if this is the case”. I’ve got to admit I’m feeling very freaked out about this - more so than MS - hence my reason for asking about your knowledge of APS. Thanks in advance Mand

Just in case George doesn’t see your post straightaway, I thought I’d give you the NHS link to APS: Antiphospholipid syndrome (APS) - NHS

Hopefully that will help a little bit.

Sue

Thanks Sue

I have had a good look through the site already as George had posted a link previously.

Unfortunately I cant seem to find a forum to ask questions and what I really want to find out is whether or not I could start at least taking a daily aspirin without it affecting the next blood test. I can’t get an appt with my GP for 3 weeks. I’m quite scared about the issue of blood clots and have to wait at least another 10 weeks before the blood test and probably several more weeks to hear about the results from the neuro.

I suppose I’m also wondering whether the areas that have shown up on my MRI and the positive VEP are caused by APS and nothing to do with MS at all. Its been at least a year since this episode of symptoms started as well as other strange symptoms over the years and it feels like I’m just allowing things to get worse without actually doing anything apart from wait for various appts.

Sorry about the rant! I know lots of people on here are in the same horrible position and it truly helps to come on here and realise that I’m not alone and also that people want to help

Mand

They took my blood and I take aspirin every day only the small one, I think it’s in a dosage for pain that makes a difference. I can only say for my self that they did it might be important for you not too. Kay

Thanks Kay