Newbie! Thoughts please?

Hi Everyone!

I’m new here and was just after some thoughts, really!

I’m not diagnosed ,and from what I’ve read here, that could take a while!

I have so much I want to say, and this is my third attempt, and I just seem to ramble, so I’ll try and keep it short!

I’m 48 yrs old. I was referred to a neuro a month ago because I was suffering vertigo, constipation (unusual for me), was ‘clumsy’, had slightly slurred speech and was forgetting words. My sister put the idea of MS in my head, (she has fibromyalgia and my father has PLS, ’though apparently they’re not connected) and I put it in the GP’s, hence the referral. She did initially suspect a stroke but ruled it out after clinical exam. (Questions, reflexes and muscle tone.) I opted for a private consultation to speed things up, really, and the consultant said that she saw nothing on my clinical exams to worry her, except a slightly reduced grip in my right hand, but referred me for an MRI to rule out MS. (I also suffer from severe over active bladder-10 years or so, for which I have botox treatment for every six months) and tinitus. I can’t stretch to the MRI privately, and my GP is hopefully sorting out an NHS referral for me. The symptoms I had then are now gone, apart from the constipation.

I have had over the last three years or so, a pain in my right side, that was twice diagnosed by my GP as gallbladder symptoms and twice sent for an ultrasound scan which showed nothing abnormal. Eventually I had an endoscopy and colonoscopy along with a hoard of blood tests, last April, all of which showed nothing abnormal. Also in that time frame I have had a ‘strange’ back ache, more like a painful tightness in my upper back, maybe two or three times and three episodes of ‘rigors’, with no temperature, to the teeth chattering point. Then all I’ve wanted to do is sleep. Two days ago I woke up with this tight backache. After an hour or so I got ‘tingles’ from one side to the other, ribs to ribs, from the same area as my ‘pain’ to the same point on my other side. It hurt! It was the most painful episode yet! For the rest of the day I took cocodamol, which helped, but my bra felt like it was at least two sizes too small and I had to take it off-not pretty at my age! Now I’ve researched a little, could this be the dreaded MS Hug? Yesterday I was uncomfortable, and today I’m fine. Previously though, these pains have been there for up to a couple of weeks. Also in January, before I saw the neuro, I had my first ever episode of sleep paralysis-it terrified me! I didn’t mention it to the neuro because until I started looking on this site, I didn’t even know it had a name, let alone could be something! In fact I now know there’s a lot I didn’t mention to her because I didn’t think it was relevant. Leg stiffness, pins and needles,feeling like something is stuck in my throat and gulping air when I’m drinking. I worry now that if I get to see her again, and then mention them, she’ll think I’m making them up since researching them.

My other question is, if the neuro saw nothing to worry her on my initial consultation, is it possible I still could have a neurological problem? I am aware that even if I do get an MRI, even that can’t always prove conclusive.

Well, so much for keeping this short!

Thank you for taking the time to read this, and any comments or thoughts would be welcome!


Hello and welcome :slight_smile:

As soon as someone says, “My mum/dad has…” my brain immediately leaps to genetic conditions. I’d never heard of PLS so had to google it; I see that it’s not considered hereditary, but then neither is MS and it does have a tendency to run in some families. Saying that, I’m not sure how well some of your symptoms fit with PLS.

Anyway, you’re on the right path to finding out at least! Why not make a list of the things that you forgot to / didn’t tell the neuro and just say, “I was a bit overwhelmed last time and didn’t tell you everything. I’ve been thinking more carefully about everything and I wondered if any of these were relevant…” Let the neuro decide what is and what isn’t related.

Different neurological conditions are different in the clinical exam: some might not show at all; some show up in particular ways; some are similar to others; etc. A neuro saying that there was nothing to worry her probably only means that you didn’t need urgent care, but I don’t even know that neuro so I could be completely wrong!

I know it’s hard, but the best thing to do is just go with the flow. Do make sure that the neuro has all the information that is needed, but after that, it’s really up to her.

I hope your MRI appointment isn’t too far off, and that it goes well :slight_smile:

Karen x

Thank you Karen!

That sounds like the best way to approach the neuro!

I’m pretty certain something’s not quite right, and more worried that nothing will show up anywhere! I have just had another round of bloods taken, hopefully the results from them will shed some light! I too hope the MRI isn’t too far away, but fear I rather shot myself in the foot by going private to start with! Hopefully I won’t have to see the (or another?) consultant again before the MRI referral!

Again, thanks for taking the time!