un-diagnosed and not sure how to move forward

New diagnosis and before diagnosis
1

Hi, I’m new to all this and hope I’m not wittering on. Just feel lost at the moment.

In 2009 I started suffering with “black spots” in my field of vision in my left eye, this made me feel nauseous and left me unable to drive. I was sent to see an eye specialist who (after many tests) put it down to migraines even though I’d never really suffered so much with headaches. I thought nothing much of it and gradually over a couple of months it went away. Then one morning 6 months later I woke up feeling numb down my left side, it crossed my mind that this could be something to do with the previous migraine problems even though I had no headache, so I went to my GP who swiftly sent me to hospital. I had an MRI done which showed a glioma (or lesion) on my lower right thalamus, I just happened to walk past a doctor looking at my scan and clearly caught a glimpse of this Glioma which was a bit scary. The Neurologist came to see me later that day and took no time in telling me that I had a brain tumour and proceeded to tell me in great detail what type he thought it was etc.

After many trips to the hospital to see neurologists and surgeons it turned out it wasn’t a tumour as the glioma was fading but MS was mentioned as one possiblity.

4 years down the line and I’m still none the wiser, I’ve had weakness in my limbs, extreme fatigue, eye sight problems, aching joints, shooting pains like I’m being jabbed with a cattle prod, bladder problems, heat intolerance, Vitamin D deficiency, memory problems and probably other symptoms I’ve forgotten. At first things were few and far between but now the pain seems to be coming more often than its going and for much longer, I’ve tried amytriptiline, gabapentin, co-codamol and I’m currently on tramadol and pre-gabelin. None of these have worked very well.

I’ve had various trips to the Neurologists, lumbar puncture came back normal (with an ever so slight protein abnormality, not sure what that means) and my EVP came back normal. I’ve seen several different Neuroligists but one suggested that the 1st episode I had with my eye could have been optic neuritis and that they’ve taken so long to do the EVP (2 years later) that it’s possible it’s been missed.

I’m at my whit’s end now, I have no diagnosis, I’m in really bad pain, I have no support (other than my wonderful wife) and every time I tell the doctors they just try me on new pain killers, I was supposed to see the pain therapist but they cancelled on me because they suggested I only needed drug therapies, the neurology department won’t scan me anymore unless something “significant” happens (loss of use of limbs etc), could more lesions not appear without me having a significant change? Does anybody else suffer like this? Am I wrong to feel let down by the NHS? I mean I’m not suggesting I do have MS but something is wrong and it all seems a bit coincidental.

2

hi danny

its all wrong that people are left in limbo like this

have you been seen by an ms specialist neuro?

i cant understand them cancelling your pain therapist! its YOUR pain!

i hope you have a good gp who is understanding and helpful

try posting on everyday living because they have some very clever folk on there

carole x

3

Hi Danny and welcome :slight_smile:

Yes, it’s possible for more lesions to appear without symptoms; they’re called “clinically silent lesions”. However, with the way budgets are and the cost of MRI scans, a neuro will almost always be unwilling to do a scan without a good clinical reason.

There’s a saying that time is the best diagnostician, in other words, whatever it is will reveal itself in its own good time, but while it’s true, it’s not a lot of help for those of us who want some answers sooner rather than later :frowning: Trying to judge when the best time to go for another opinion is tricky though: a different neuro may see things differently, but if none of the evidence has changed, it’s going to be hard for them to come up with a different answer. Which means that waiting for something to change is sometimes the best, albeit frustrating, thing to do.

As far as pain management goes, I’ve heard that a combination of neuropathic painkillers can work well so, e.g., pregabalin and citalopram rather than pregabalin and tramadol. Perhaps discuss it with your GP? Aching joints can be a symptom of vitamin D deficiency so hopefully that will ease as you get your vitamin D level up. Have you seen a neurophysio though? They may be able to help identify what type of pain it is and even perhaps what’s causing it? (Your GP can refer you.)

Hth.

Karen x

4

Hi although Ive had different symptoms to you ie eye trouble...Ive had none, except for a twitch in one eye, I do understand your frustration well.

I am in my 16th year of very PPMS like problems.

Over the years, i`ve had 4 MRIs, 2 LPs, 2 EMGs, 1 VEP and oodles of blood tests. Nothing proved MS…or anything else!

Last year I was finally told i definitely do not have MS, after being 95% diagnosed with it.

When I asked how they can confidently say this, I was told that although I have no mobility, have spasms and quite bad spasticity in my legs, have chronic bowel and bladder problems,

the neuro said i would be in a worse state than I am if PPMS was present. I was also told that i wouldnt be able to hold an lengthy conversation! I felt the last comment to be insulting to those who do have PPMS long term…it`s utter rot!

So instead my label reads;

idiopathic spastic paraparesis (ie cause inknown)

It may turn out to be the gentic form of SP…or not…who the chuff knows!

luv Pollx