Forum

My GP thinks I have MS : (

Hi - I’ve read quite a few posts on here and websites to get my head round this turn of events and not sure at all what to think but I guess he is probably right. I have a neurologist appointment for 11th Jan but my GP is now trying to expedite that.

Chronological Symptoms:

  • Constipation since aged 15 - my bowel has never worked well but has almost totally stopped several times over the last two years, leading to impaction. Colonoscopy was entirely clear.
  • Age 28ish I saw a neurologist for pins and needles/numbness and weakness in left limbs, hand and foot. The MRI was clear and there were no untoward neurological signs at the appointment.
  • Age 32ish I had a check up at the optician and they said I had ‘pale nerve endings’ and asked if I’d ever suffered from pins and needles or anything. I said yes but dismissed it.
  • This year in March (age 42) I had some possible virus or post-fatigue thing with dreadful tiredness, my blood tests showed extremely low white blood cells and platelets but slightly raised inflammatory marker (CRP). I also suffered mild-medium vertigo in the classroom and felt like an unco-ordinated stumbly klutz.
  • Beginning of June I started to have an awful roaring in my left ear + (pain/pressure?) in left side of head triggered by computer hum, xbox games, low planes overhead, trucks rumbling by etc. Incredibly unpleasant and lasted throughout the summer. I also had a constant feeling of weird flu-like skin on that left side of my scalp (which has still never ceased since June).
  • September I saw an ENT specialist where I also reported I was starting to feel some tingling down the left side of my nose and possibly in my left hand. She said my ears were fine but ordered an MRI to look at the inner ear and see and said I should see a neurologist.
  • The MRI was clear so I said I’ll recover in time and don’t think I need a neurologist!
  • Thurs 10th November I had the ear roaring plus strong tingling in my left calf and a numb left foot for several hours. I already had tingling across my left face which had spread from that original nose tingling, subtle tingling in my left hand and weakness in my left arm. I saw the doc and he said he wanted me to see a neurologist. This time I agreed.
  • Weds 17th I had an awful attack of the ear roaring with pain behind the ear which lasted into Thursday plus I was so so tired. I saw doc again and he instantly wrote a sick note for me to take a week off work and said he’d expedite the neuro appt. That evening the muscle above my left knee started twitching - we could watch it!
  • From Sat 19th to Weds 23rd I felt incedibly nauseous each morning. I went to bed Weds morning and that was when I had my first head and right arm jerkings. My arm had a life of its own. That was scary.
  • Since then the jerkings have increased to happen every time I relax - whether sat on sofa, going to sleep at night or even today sat at my desk at school! Since Friday these have often been accompanied by a tight contraction of my abdomen which is unpleasant but only lasts 10/20 seconds or so - it’s a real work out! The longest lasting ones squeeze my bladder as well and I have lost some urine during it a couple of times!

This is beginning to depress me now and I am such a chirpy person but I think these muscle jerks and contractions might have confirmed in my head the doctors suspicions.

I know I need the neuro appt for a proper diagnosis but any insight from members who know so much more about this than I do would be much appreciated.

Thanks

Hi Deb & welcome to the site

I think your GP is right in referring you to a neurologist but I don’t think he should have mentioned what he thinks it may or may not be - simply because he’s not qualified too - only a neurologist can do that. Plus of course now ‘ms’ is at the forefront of your mind…

Prepare for your appt by keeping a note of your symptoms - keeping them brief & to the point - take them with you when you see the neuro and go through the list with him. He’ll most likely examine you and from there may order tests etc to start ruling things out, there are lots of other conditions that can present similar symptoms to ms - not all neurological either. So try to keep an open mind. Also, some people find it helpful to take someone with them to their appt.

Don’t be afraid to ask the neuro questions - this is where it can come in handy to have a relative/friend with you. Unfortunately it’s unlikely that you’ll come away from your 1st appt with answers as to what’s causing your symptoms so be prepared for that too.

In the meantime, although it’s easy to say but so hard to actually do, try not to get too stressed out because quite often this can exacerbate symptoms and make us feel so much worse.

Oh and the other thing is to speak with your neuro regarding meds - you don’t need a dx for some meds.

Good luck - I really hope that you get some much needed answers soon. Don’t forget we’re here if you need us - that’s the wonderful thing about this site, everyone understands what it’s like & there’s always someone around to listen & help where they can

Mail me anytime

Debbie xx

I think my GP may have had it nagging the back of his mind for a while. I have had it at the back of mine for years to be honest but ignored it knowing that if it was ever going to be true it will rear its ugly head one day. There are numerous other little feelingy things which I haven’t mentioned above like the warm water feeling on the back of my right thigh etc. Do other people think they must be imagining these things? I convinced myself I make things happen by thinking about them but the ear noise and strange feeling to back of head is very very real as are the bizarre jerks and jolts. Can people have meds for these before even seeing the neurologist?

I received a letter today saying I’m having an MRI next weds so thats good, I didn’t even know one had been arranged! Presumably that’s so the neurologist has the results before the appointment.

Ho hum the waiting game is well under way.

Thanks Debbie! xx

Hi

(I didn’t reply before because Debbie covered everything I would have said.)

The imagining things is an interesting topic. I think perhaps that sometimes we notice things that other people wouldn’t, simply because we are looking for them / are more aware. This means that some people might think that things are worse than they really are, and also therefore might include some symptoms in their history that the neuro will think they’re imagining. Of course the knock on effect of that is that the neuro starts to wonder if we’re imagining everything - not good! The other side of the coin is that people who don’t have neurological symptoms just don’t “get” them, so the obvious answer to them is that we’re making things up or exaggerating. This is especially bad for invisible symptoms like pain and sensory symptoms.

Some limbolanders spend years being told that their symptoms aren’t real. There’s no doubt that a lot of them will start to believe what they’re being told. Some of course really will be having “fake” symptoms (e.g. have a functional disorder), but it’s not the same as imagining or making up symptoms: no damage in the brain does not mean that it’s always going to work perfectly, and we really don’t control most of it! Plus functional symptoms feel the same as “real” symptoms!

I’ve been diagnosed for a long time, but sometimes I wonder if my mind is playing tricks on me. Maybe it’s a form of denial - if it isn’t my MS, then maybe that symptom can get better?

It’s great that your MRI is before you see the neuro. Should speed things up a lot. Can you get meds beforehand? Yes, in theory you can get meds from your GP. However, a lot of GPs are very reluctant to prescribe anything without a neuro or MS nurse’s approval. If you can bear it, it’s probably best to see the neuro without any meds to mask your symptoms though.

Good luck!

Karen x

Hi Deb

That’s great news about the MRI - at least the balls now rolling! Let us know how you get on.

Imagining things? I’m not sure about that but I guess because we have so many odd, strange sensations & feelings maybe we’re more tuned into noticing things? The other thing of course is that it’s very easy for others - who don’t have issues like these - to fob them off as being nothing…But I feel pretty sure that if they were suffering something similar, then they wouldn’t think that way?! On the other hand I think it’s also very easy for someone to put every symptom down to the condition that they know they already have - but that won’t always necessarily be the case.

As for meds, if some symptoms are really unmanageable (pain) then have a word with your neuro. As your mri is already booked and hopefully an appt with the neuro is forthcoming then maybe try & hang in there and see what’s what.

I hope you get some answers sooner rather than later - with any luck it’s not ms. For now though there’s no telling so try to take each step at a time.

Good luck

Debbie xx

Thanks for all your words and comments. I’m now on Diazepam for the spasms and been told firmly to stay off work until we know what’s going on!! No one is taking this lightly, thankfully. I now have jelly leg and no ‘normal’ feelings about when my bladder is full, although thankfully there are other subtle signs and feelings!

This is such a weird thing. I’m also told a tumour needs ruling out but I’m not slurring speech or changed personality etc so not really space occupying symptoms.

Doc has discussed with neurologist and they expect to make diagnosis after MRI next week. We know for sure something’s very wrong though

Really pleased that you’re getting some proper support.

Please let us know what happens!

Good luck.

Karen x

Hi emmae, I’ve often put my hand on the back of my leg as it felt like water was flowing down it! I’ve been clumsy, weak and far more tired than I should be regularly over the years. Earlier this year I thought I had to get a grip and get fit so joined a gym and just got worse ending up thinking I must be a very pathetic person! This year the worst thing has been the hyperacusis - hypersensitive hearing with roaring in my left ear triggered by xbox, computer machine etc but I think this is a rare thing and most MS sufferers wouldn’t get this, and it’s definitely not possible to imagine it! The cold creepy skin is on the same side of my head and tingly left limbs with one morning of a numb foot.

The spasms and jerks which only started a week and a half ago are getting far too regular and increasing daily. I have also had 4 longer convulsions in this time during which I did remain conscious. This week I also wet the bed one night, can’t tell when my bladder is full (am taking a good judgement though!) and had a weak jelly leg on Wednesday/Thursday. More of the sensory patches are also occuring all over me now but fleetingly. It’s very grim and is very embarrassing indeed.

The doctor is very concerned and he is the one trying to convince me I’m not imagining the sensory and weakness things whilst I brush them off as psychological. I’m very lucky in that but in just the last two weeks things have become sooo noticeable that all the things I thought I was imaging have paled into insignificance.

I’m very concerned particularly by the spasms and praying it doesn’t indicate a tumour rather than MS. Although maybe that is a better outcome as it’s not for life. Somehow, I don’t think I’ll be given the choice!! The doctor, in discussion with the neurologist is pretty certain I have MS or potentially a tumour but an MRI in September was clear.

What I’d like to know is how much people have spasms in a relapse? I’ll do a new post to ask this.

Good luck to you emmae and keep posting your fears etc. I really hope you get your answers too.

Debx