Casual MS diagnosis..thoughts please.

[Inactive_User]

Hi All,

I wanted to share my recent experience for thoughts/opinions please. In Feb 2015 I began to develop a twitch in my left eye, initially,I put this down to excessive tiredness, I work and have 3 young children, a fairly hectic life so it is it unusual to be shattered!! Symptoms progressed to facial numbness and followed by a loss of feeling/movement on the right side of my face. I was admitted to hospital with suspected Bell’s palsy. There was some debate over diagnosis as both sides of my face had been affected and this apparently only happens in less than 1% of Bell’s palsy sufferers. So an MRI was done and I was advised that one doctor could see deylimation? So referred to neurology. Also had a lumbar puncher too. Steroids helped with the symptoms and within about 3 weeks I was back to normal.

During one of the physical examinations in hospital one of the doctors noticed my thyroid felt enlarged too. This is currently under investigation too with a nodule having been found on a ultrasound.

2 weeks ago I suffered an unexplained fairly severe allergic reaction to something. Really itchy , covered in hives, my hands feet, ears, mouth and eyes swelled up. I was admitted to hospital and again given steroids which worked thankfully. It was noted that my white blood count was high and I had a high temp too so they were confused as to whether this was a reaction or infection. Once symptoms settled I was discharged and given a referral for the allergy clinic.

So I finally saw my neurologist this week, he was very nice but a little unhelpful to begin with as he hadn’t looked at either my scan results or lumbar. He examined me and took history. I mentioned that I’d noticed some short terms memory issues since the episode .He said that he didn’t think I’d had Bell’s palsy and thought it was more of a neurological episode, I pressed him on this as he said, well your 34, white female, it’s likely to me MS!! I was shocked at the way he just kind of threw it into the conversation especially as it seemed to be based on very little. He said he would chase my results and contact me again. I left the appointment not knowing what to feel really.

The same consultant rang me at home the next day. Said he’d now looked at the results and there was inflammation on my brain. He stood by his Ms diagnosis and said he would now be urgently referring me to Specialist at a nearby hospital. He apologised for giving me " the news" over the phones, wanted to make sure I had someone with me at home and tried to reassure me with comments about recent breakthroughs in Ms medical treatment research.

his call knocked me sideways… It seems so quick, I’ve heard of people waiting years for a Ms diagnosis part of me is dismissing his diagnosis but i don’t know if it’s just denial on my part. Another part of me says a neurologist has looked at your tests and diagnosed Ms… What more proof do you need?? Maybe I’d convinced myself I was ok because the symptoms have gone away?..

I’m just after opinions really…as you see I’m new to all this, do folks think this was a hasty diagnosis? Or do I need shaking to accept the truth?

thanks and sorry post in a bit long

[Anitra]

Hi there,

If I’m honest, I would say you haven’t been diagnosed yet. I’m not saying I think he was wrong, and yes, it may indeed turn out to be MS, but I very much doubt you have met all the criteria for a confirmed diagnosis - which usually requires clear evidence of at least two separate attacks, or ongoing deterioration spanning quite some time - I think two years or more.

I also think the thyroid nodule and the unexplained allergy-type thing are a bit fishy, and neither would be anything to do with MS. Of course, MS (very unfortunately) doesn’t mean you can’t have other health issues too, by coincidence, but I would be wondering if the allergy thing, in particular, really was just coincidence, or if it’s related to the other symptoms you’ve been experiencing.

Although it’s an auto-immune condition, MS does NOT cause allergy-like symptoms, so I’m certainly wondering what are the chances you would have an unprecedented allergic reaction out-of-the-blue, just about the same time you develop signs and symptoms suggestive of MS. Is this really bad luck - a coincidence - or are they two aspects of something that isn’t MS?

I don’t know offhand of any conditions capable of causing both a severe allergic-type reaction AND brain lesions, but it wouldn’t surprise me if there was one - perhaps something a bit more obscure than MS.

It certainly doesn’t sound as if the neuro who saw you was an MS specialist (or why is her referring you on?), so I’m not positive whether he would have been suitably qualified to diagnose. I also think he may have been a bit quick to dismiss factors that could point to a different answer.

I don’t want to give you false hope that the “diagnosis” is wrong, but I do want to prepare you that it might not be quite as all done and dusted as has been presented at the moment, and there could follow several months of investigations to get to the bottom of what’s the matter.

I “thought” I’d been diagnosed in March 2010, but when I saw the neurologist’s write-up to my doctor, it was couched in much less certain terms, and said it was only a “probable” diagnosis. I didn’t know then what I know now, which is that they must have proof it’s more than a one-off. We didn’t have that proof until the October, when a repeat scan showed new activity, so diagnosis is a process, rather than a single event.

I hope this helps explain.

It would greatly help to see what the neuro actually puts in writing to your doctor - you should receive a copy. This will clarify whether you’ve actually received an MS diagnosis, or are still in the “probable”, or even only “possible” camp at the moment, pending further investigation.

Tina