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How my path has lead me here

Hi all. I’m Jamie, a 38 year old man from sunny Dover in Kent. My current path has led me to research MS and I will explain how and why. I thought it might be an idea to describe my current scenario as I have discovered it, so hopefully that will help with the thought process I am going through…

In January I went to Norway. Before I had even arrived I started to experience what (at first) just felt like a very stiff neck. After a couple of days it got worse, I could not look up, carry anything on my back and instantly seemed drained of all energy. I more or less stayed in bed for the next 4 days until I came home. The pain seemed to transfer to my shoulder. Upon arrival back in UK I went for shoulder and neck X ray. Both appeared normal.

Two months further on, and the pain had got worse, still no neck movement, constant tingling in my right little finger and severe pain at base of my neck. Along with this, I still had zero energy and only was getting out of bed because I thought I had to…

Multiple physio sessions at first led to diagnosis of possible positive result for Adson Test (Thoracic Outlet Syndrome) but the physio achieved no pain relief or easing of the symptoms. I am a train driver, and being off work during this time I was keen to move things on, so I was referred privately for an MRI of my neck which took place on 23/03/18.

The result of this showed just narrowing of the exit canals, arthritic bars and effacement of the ventral surface of the Theta. I was told, although relatively quite young, this was arthritis and that was causing my symptoms. At that point, I had no reason to think any further about other issues…

As my neck, shoulder and little finger had still not calmed down, I was referred by NHS to an orthopedic specialist. I was really unhappy with her assessment…she almost mocked me for not stretching my neck in a certain way previoulsy,and said that with simple stretching my range of neck movement would improve and that was that…she wanted to discharge me there and then (this was a month ago) but I asked to see her again, which is happening this Friday.

SO…Still no reason to be here right? At this point I agree.

For the last maybe 6-8 weeks I have increasingly become aware of certain things happening to me, namely

I have wet myself when I have been out 3-4 times, no warning. I am starting to walk on tip toes around the house, because if I didn’t I’d stub my toes every step! My right little finger is increasingly “hooking”, and I find it hard to straighten. I have crapped myself indoors twice. I find it very very hard to walk up hills, just hurts the top of both feet near my ankles. My right foot is naturally starting to point outwards when I stand in normal position. I’m starting to notice I find it quite hard to use the brake in the car as my right foot points slightly out. I have no energy, ideally I’d just lay in bed all day. I get pressure headaches at the back of my head and above ears.

So, still no reason to suspect ms right?

Same here. Until this week, when searching for neck pain, and bowel movements etc I stumbled across an MS site. Other than being aware of ms, I had zero knowledge. What I regarding symptoms and history made me cry instantly. Now this is where I have made a connection.

I have always been super fit, was yts footballer,played soccer in the USA and joined the police in 2000.

From 2004 -2010 I served a detective in the Met Police. During this time, at least once a year -18 months I would be off sick. It would always start with flu-like symptoms of aching all over, serious lack of energy or motivation. What should be a 2 week sickness led to a month, up to 3 months off at a time. By 2009, I was simply diagnosed with acute depression. I could never workout why, I would go off with a simple sickness which would then spiral to me not wanting to get out of bed for days at a time. In 2010, due to my poor sickness record I resigned from the police.

The exact same thing happened again in 2012 and 2015.

Still could be a number of things…but then in January 2016 I was laying in bed, when I had the feeling of a what I thought was a heart problems…my chest was so tight I called 101 in bed. I have medical training so knew it wasn’t happy heart attack.went to docs and X rayed. Told it could have possibly been costachronditis? Again, with this I was notified in bed for two weeks with “flu like” symptoms.

June 2016 Woke up, with my eyes so swollen looked like a had been beaten up. Lost vision out the sides of my eyes, couldn’t look at light or look forward. “Flu like symptoms” went with it. I was off work for a month. Had steroid drops, and told it wasn’t an infection but that was it…Sight returned, but my eyes lost strength after that.

It is these two incidents which made me think a little more…could the chest tightening suddenly have been the ms hug? My eyes going suddenly…potentially optical neutrisis? My sickness record over last 12 years, shows me attending docs with aches and pains and each time has led to extenderd periods off work.

Over the last year’s, I never have sickness at work for just a single day off, I’m consider myself fit, but when I do have extended sickness I kind of “know” at the time I’m going to off longterm from the start which I find strange.

I re attended my docs earlier this week (before finding possible ms connection) to get a private referral for further investigation but doc says I need to see the ortho on Friday first before she can refer. I never linked my previous history til after that appointment.

I’m a train driver now, and will probably lose my licence to drive over this. As I mentioned at the start, I went off work in Jan with what I thought was just a sore neck. Obviously I hope I don’t have MS, and am intelligent enough to know it could be a number of things BUT with my history in my 20s, multiple periods of unexplained sickness, my severe chest squeeze, Optical issue, the neck pains and turning in of my foot, along with loss of bladder control and rapid deterioration of my posture, it’s surely enough evidence to at least ask the question right?

Thanks

Hi Jamie

The biggest problem with MS is the number of different symptoms which could point towards it. They don’t always. And when you look up some of your symptoms and discover that an MS diagnosis could be the answer, it often makes people think ‘eureka, this must be it’. And it could be, but equally might not.

What you should be wary of doing is slotting your symptoms into a disease and asking about that specific thing. What might be more useful is to ask your GP whether they think your medical history might warrant a referral to a neurologist.

A neurologist will look at you as an individual, ask about your history, do a neurological examination and decide from that point whether they think you have a neurological disorder, and then start testing to discover what that disorder might be. So they start with the symptoms using their knowledge and experience, and then think about differential diagnosis, rather than starting with a diagnosis and seeing if you fit that disease.

So it sounds like you’ll need to see the orthopaedist first, then start getting referrals to other specialists.

Do come back to this forum and let us know what happens.

Sue

Hi Jamie,

Sue is giving you good advice. There isn’t anybody, on any Forum, that will say if your symptoms are indicative on MS; only a neurologist can diagnose MS, and that often in conjunction with a neuroradiologist.

You’re right, it could be a number of things, with your history, but if you want to pursue this particular path then you could see a neurologist privately.

They would arrange MRIs, a lumbar puncture, evoked potential and blood tests and then, when they had eliminated a whole bunch of other conditions, they’d be able to see if you fitted the MacDonald Criteria which is the touchstone the medical profession has to use to diagnose one of the four main types of MS.

I wish you good luck,

Anthony

Thanks. My issue is mainly I have the worst doctor…I tried to go private again last week, contacted BMI who done my MRI and I can’t get anything done until my next doc appointment. I could go in there 2mins from death and still be back out the door 2 mins later. As I mentioned, I’m not looking for ms or anything else, but if I don’t start collecting data and putting it into a time line for someone to look at, one thing is CERTAIN and that is nobody else is going to. Thanks for your inout

hi jay

you have really been through the mill.

try writing it down as a time line, noting when a symptom began, if or when it stopped.

make sure that your eye sight is mentioned.

this will help with your first neuro appointment.

meanwhile, the not being able to feel the brake with your foot is a concern.

maybe you’d be better with an automatic car.

carole x

So had Ortho today. Last 3 days have had wet feet sensation, and constant ringing in my ears like I’ve just stepped out a nightclub. Ortho concerned as I can’t move my feet up, my leg reflexes are all over the place and I’m starting to lose track of my thoughts mid sentence. Have been referred for emergency spinal MRI. Ortho has said I need to see my doc (Tuesday) for any neuro referral as it’s not her field. Just hoping it’s all tied in. I told her I had wet myself twice in last 4 weeks in public. She told me if this happened again I should go straight to a&e.