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Neurology appointment tomorrow....

Hi,

I’m not sure if I’m being a hypochondriac, or not, but I’ve had the following symptoms and, after a few (well numerous!) google searches, I have self-diagnosed myself with MS. No doubt there are loads of people out there that do this, but I’ve got my first neurology appointment tomorrow and would welcome any feedback as to what to expect. Here is a timeline of my symptoms and I welcome your thoughts as to whether or not I’m likely to barking up the wrong tree or not:

Pre-Autumn/Winter 2014

Bladder - Over the last few years, I have had occasional problems passing urine, if I left it too long, I could only go a little bit and I’d be standing there in discomfort waiting for the rest to come through but it didn’t (I can only liken it to someone sticking a bung it while you’re trying to go!). This has gone on for a couple of years and I’m not sure that it’s related to my other symptoms. The GP has checked the obvious, prostate, but nothing unusual was detected. Sometimes, I can have to stop and 3-4 service stations, one after the other!

Bowels - I’ve had weird bowels for years, loose stools daily and don’t always get to finish breakfast before having to race off to the loo! I’m not sure that this is part and parcel, but possibly. I just assumed I had IBS, so wasn’t really that bothered. Breakfast time is worse, no matter what I have for breakfast, but also it seems to be related to some foods.

Head ‘stabbing’ sensations - for 10-15 years I have had occasional ‘stabbing’ in my head, but I hadn’t thought much of it. It’s only now that I can see that the really bad ‘stabbing’ pains were actually quite like these electric shocks that followed in February… .

Autumn/Winter 2014:

I started having blurry, sometimes double vision – I just thought I was over-tired, as I had to really concentrate on night driving. When not driving, ie watching tv, it seemed better if I tilted my head back, or if I cupped my hands either side of my eyes. I have had my eyes tested since (spring time) abut they are excellent. In fact, I was told not to bother with the glasses! I then wondered if the blurred vision was related to the use of aqueous cream on my face, particularly as it seemed quite bad in the morning, so I stopped using it for a while, but it made no difference.

Feb 2015:

Electric shock sensations started in my testicles - some very bad and enough to ‘blow you out your seat’. I thought it was the seat-belt sensor in my car electrocuting my scrotum initially but, I tried sitting on a magazine and it continued! Soon after I realised that they were happening at other times, when not in the car, but usually when seated. Went to the GP who suggested Perineal Neuralgia, but over time, it ceased to remain in the perineal area.

Over the coming weeks, the shocks started occurring to other parts of the body:

  • Feet

  • Legs

  • Shoulders

  • Eye socket (this was the worst!)

  • ‘Stabbing’ in my head

Around this time, I thought my symptoms might be diet related, as I went vegan the year before and I had read about vitamin B12 deficiency having similar symptoms, so the GP contacted microbiology and did a range of mineral/vitamin tests, all of which came back normal. However, despite the B12 levels being normal, I wonder if it is possible that perhaps the B12 is not being absorbed due to the form by which it is being ingested (via supplements rather than in meat/fish)? Or, by being in the blood, is it already absorbed?

May 2014

Ongoing shocks/prickles/tingles, but also vertigo on one occasion

June

More shocks, but less severe. Blurred/double vision no longer an issue (although you sometimes, in meetings, have to ‘concentrate on looking’ as you wonder if you’re going boss eyed!).

July

A bad month - Blurred/double vision occurred again, but now with occasional extreme tiredness, like I’ve never had before. Falling asleep on the sofa (not like me), but more than this, my legs were really weak on a couple of occasions (felt as if they ‘weren’t mine’ as I was walking). Also quite a few shocks later in the month and to new areas (along spine, tips of fingers)

My gut feeling/thoughts on what’s going on:

I initially thought that perhaps these shocks might be a gradual onset of epilepsy, perhaps simple partial seizures, but now, after doing some research, I think it’s more likely to be either

  • MS (most likely, as the symptoms match up pretty much exactly)

  • Fibromyalgia (possibly bought on by an undetected Lymes disease in the past, but wouldn’t Lymes have been picked up when I had my blood tests, either when I had my 40 year old well man check, or when I had the range of blood tests in March? I’ve never had the typical rash either (although I know that this is not visible in 1/3 of cases)

  • Anxiety? – I think this would be unlikely, as I’m not anxious and don’t think I have any other symptoms. If I’m anxious, it’s blatantly obvious! The only thing I’m anxious about is not knowing what’s going on with my body!

Does this seem like the 1st signs of MS to you?

What should I expect at my 1st neurology appointment?

I welcome your comments…

Don’t become a hypochondriac about it; believe me I know how anxious it is to get answers but you are probably at the start of a diagnosis of something.

See Diagnosing Multiple Sclerosis

George

Hiya. I just want to say gd luck for tomorrow.The neuro will ask you symptoms , exam you and then determine the next course of action. KatX

Hey, everyone will tell you its hard to diagnose MS even for neurologists!! There is a special BT for Lymes - so you wouldn’t have had it until a GP specifically requested it. I wondered about fibromyalgia but I don’t have the required pain points and my neurologist told me that if it was that I wouldn’t have reacted to the neuro exam the way I did.

Good luck with your appt - be as honest/detailed as you can and take your symptoms/date list with you (although he may not want to look at it - mine didn’t!!). I would expect after he has talked to you and examined you (reflexes, push/pull etc) he will suggest an MRI if he is concerned. Mine did and I have it on Thursday.

Best wishes

Carrie x

Thanks Kat, George and Carrie

I had the appointment today, and the neurologist doesn’t think it’s MS. She said that the shocks would be more localised (they are all over) if this was the case and she suspects that they will just fade away over time (which was what the GP had originally suggested). That said, she wants to rule it out as well as a possible:

  • thyroid problem,
  • calcium deficiency,
  • possible lymes disease … who knows.

She said that ultimately, her examination hasn’t really flagged up anything at all, so she will:

  • book in an MRI
  • arrange blood test for Calcium, Lymes and Thyroid function

So, it’s a bit of a waiting game now…

Thanks again folks.

Hello Charlie, sounds like a positive app. Good luck with the wait, hope you get some answers/relief: )