Pre-diagnosis, poss MS. I'm spinning out of control

[LittleScottish]

Hi all,

Posting here, rather than in health, for traffic, as it's really quiet on there.

Was hoping for some reassurance / a hand hold (I think. I don't know what I need, to be honest), as I am driving myself absolutely crazy pre-diagnosis, and my anxiety is through the roof.

Was diagnosed with optic neuritis 8 weeks ago, for the second time in 4 years. The first time wasn’t too bad but this time it has knocked me for 6 – lots of pain, and my eyesight is still severely up and down from day to day.

I’m currently under the eye hospital and have had all of the required eye tests to rule out anything sinister, including a brain MRI. Haven’t had the results back on any of these yet, but have an outpatients appt with the neuro-ophthalmologist in 2 weeks.

In the meantime, I’ve been Googling MS ,(I know, I know!) as I know that multiple bouts of ON doesn’t bode well.

However, the more I read, the more that diagnosis would seem to fit, and things have been going on for ages that I’ve put down to other factors (stress, being overweight, clumsy, pished ;-)

So in addition to the ON I have: BPPV (vertigo), pulsatile tinnitus, synaesthesia (I see a bright flash in my ON affected eye, when I hear a loud noise in the dark, such as DH coughing! This is a bit weird, but is a neurological disorder, so could be linked!), lower back pain, knee pain and pain in my Achilles tendon (again, all on the same side as my ON, but could be weight related as I’ve let myself become a wee biffa.)

I’m permanently exhausted, seem to be suffering from regular bouts of the runs – can’t reconcile this with stuff I’ve eaten, I get twitching muscles on my affected side – could be thigh muscle, finger or somewhere random like my lip.

I’ve had a couple of instances recently where my back has really twinged and I’ve dribbled some pee, my regular periods seem to have gone a bit loopy this month (deffo not PG, and would hope it’s not quite time for the menopause).

I seem to have fallen over quite a few times in the last few years – not all wine related!

I also get regular headaches, have developed quite a short attention span, feel quite down and sometimes struggle to take a deep breath.

So it sounds quite damning, but then, with reading about MS symptoms, it seems like you could read them like a horoscope, and everything you read could apply to you in some way.

I guess I just want to see if any of this strikes a chord with someone, and if you think it could possibly be anything else?

I don’t feel like posting on an MS Forum, as I haven’t been diagnosed, so feel a bit fraudulent, and like I’m making a bit of a fuss (feel like this in real life as well).

Am off to see an ophthalmology consultant privately tomorrow, but at present, I don’t feel like my concerns are being heard by any medical professional. I keep being told not to worry, but I’ve only seen eye people (pardon the pun), so am conscious they’re not MS experts.

If you got this far, well done and thank you. Just writing that has felt cathartic xx

Ok, first of all, don't panic. I have MS, and I absolutely promise you that if you have it, it is not going to ruin your life. They have amazing drugs now and with some adjustments your life will stay pretty much as it is. I know it's scary - I've been there - but five years after diagnosis I'm actually in a better place than I was before I was diagnosed. I still work, go on holiday, enjoy my life. MS isn't the death sentence people think it is, and very few people even end up permanently in a wheelchair.

Have a look at shift.ms, the ms trust website and the ms society website, there are lots of people out there who will reassure and support you.

Good luck xx

Do join an MS forum - diagnosis is a long process and most of them have sections specially for support pre-diagnosis.

I have lots of the same symptoms as you but not all. Still no idea what’s causing it. It’s very stressful which only exacerbates things.

I'm having an MRI and nerve conduction tests this week after a range of symptoms that I didn't connect together initially.

When the eye ticks persisted as well as the spreading pins and needles I went to the GP. This week I read the NHS symptoms of MS and ticked most of them which worried me. I hadn't connected some of the random issues - I thought it's just getting older.

It's really really good to know a diagnosis isn't a disaster, thanks

I wouldn't say all of your symptoms match, but a lot of them can be indicative of b12 deficiency. It is sometimes misdiagnosed as MS. I don't remember the exact reason behind the symptoms but basically from what I remember lack of b12 means your nerves become demyelinated and can go a bit weird. Pins and needles, neurological symptoms, clumsiness etc are all very characteristic. Difficulty taking a deep enough breath is too - it's a funny one because you can physically take a deep breath but it never feels like it's enough.
The other thing that stood out to me was your back twinging and dribbling urine. That seems to me like a potential slipped/bulging disc impinging on a nerve. My DH has had a couple of slipped discs and numbness in your bottom and lack of bladder control is always something they tell you to watch out for.
Just some other thoughts, I hope you do get a diagnosis soon, one way or another.

Yes, I was pretty sure mine was B12 deficiency (it isn’t, levels are fine, even when looking at optimal levels rather than normal range).

My main issue is peripheral neuropathy in my limbs which has spread slowly but is now constant, and a huge numb patch on my back/spreading to neck. No idea what it is.

Let us know how you go with the tests

OP, as PP said the drugs are amazing these days. My MIL has MS and she’s remained mobile and healthy for more than 20yrs now. She’s in her 60s now and expected to have no shorter life expenctancy than anyone else. The other thing she really struggles with is getting in and out of baths, so they had a wet room put in. I know she has good and bad days but she lives a very full and active life.

Thank you all - you've helped! I've ordered some B12, and I'm trying to stop myself spiralling

If you do have b12 deficiency, it may not be dietary related (it usually isn't) so don't rule it out even taking supplements. Mine is caused by pernicious anaemia, which destroys the intrinsic factor you need to absorb b12 so the treatment is injections of b12 to get it straight into your bloodstream.
I'm sure seeing the consultant tomorrow will be helpful one way or another. Have you had any blood tests done?

I'm glad you posted. I also have pulsatile tinnitus, as well as other non specific symptoms like frequently struggling to find the word I want to say, fatigue, occasional trigeminal neuralgia, and a few other little things. I've also wondered about MS, but I have recently been found to be low in B12 (intrinsic factor is fine), so I will see if the symptoms subside once my levels are normal. In my case I have the added factors of a family history of MS, and also that I had glandular fever when I was a teenager (I've read that MS can be an autoimmune reaction to glandular fever, and I do have another autoimmune disease).