Advice on neurologists/getting a diagnosis

New diagnosis and before diagnosis
1

Hi all, I really need some advice on how to get tests for symptoms that I feel could be MS or if not at least some sort of neurological issue. I am epileptic and have been for 15 years, I don’t make a fuss over nothing, I was having 100+ seizures of various types everyday, only saw the GP once and Consultant twice, then I self managed, I was only 15 at the time.

It all started about 6 years ago. I had a horrific experience. I suddenly become very ill, I went from working 60hrs a week to barely managing 6. I had a whole array of weird symptoms, for me my life was completely turned upside down! I’d say my most prominent symptom at that time was fatigue and weakness, literally disabling, I couldn’t do any light activity without becoming almost paralysed, I just had to lay down and wait for my body to recover before I could move again. I won’t go into all the symptoms from that time as they’re extensive and I’m trying to keep this short.

I had an awful experience with the GP surgery during this time. They literally didn’t want to do anything to help me, they would only do blood tests and I always got the same answer, they’re negative so you’re fine. They told me I had Chronic Fatigue Synodrome (i.e. a collection of symptoms, not a medical condition. This diagnosis is only meant to be made when everything else has been ruled out) they were completely unsympathetic to how desperate I was, they suggested I should get CBT! They made me feel that it was all in my head and that I was just I hypochondriac.

After months of not getting anywhere I started doing me own research into various autoimmune diseases and found that many people were improving their symptoms with diet, so I put myself on a specialist diet and I slowly started getting better!

Since then I’ve being having what I’ve chosen to call relapses, about 3 times a year. It usually involves dizziness, paresthesia, walking issues, cognition problems and speech difficulties.

I’m having one of those episodes at the moment so I’m extremely dizzy, during which I have these weird wave like sensations that run through my legs (difficult to explain, like the dizziness goes in waves down the length of my legs). One of my finger tips hurts all the time like someone is digging their nail into it, feels like someone is tickling my nose, my foot sometimes drags on the floor, I struggle with speaking and have to slow down and think to get sentences out. My walking is clumsy (I look like I’m drunk) and I’m getting Jelly legs on and off.

My eyesight had declined over the last few years, I went from being long sighted to extremely short sighted with episodes of pain that felt like someone was stabbing my eye. I am also extremely sensitive to light and I’ve noticed that it takes a lot longer for my eyes to adapt to darkness.

I also meet the diagnostic criteria for POTS (an autonomic condition) an increase in heart rate of 30bpm within 10 minutes when going from laying to standing (every time, thanks FitBit). I’ve ignored the fact that I have tachycardia for years.

So basically I’m at this stage with these reoccurring symptoms and I have an absolute phobia of going to any GP because of how badly they treated me as well as also being scared of having all the tests just for nothing to show and proving them right about me being a hypochondriac. A serous phobia, I vomited blood for two years and new I had a stomach ulcer because of other of symptoms but was too scared to go, eventually I sent an email of the blood I had vomited. Turns out I had multiple stomach ulcers.

I feel like I can self manage but on the other hand I would actually like to know what is causing all these symptoms or maybe I am just crazy!

Basically does anyone have any suggestions on how I can get round this? Anyway to approach the GPs? I was thinking about going privately but that scares me too (less scary than a GP though) does anyone know of any really nice sympathetic doctors that I could see privately without a GP referral until they find out what’s wrong with me (I’m not well off).

I understand that it’s quite common with complex conditions to go though things like this and wait for ages because of all the random symptoms that most GPs can’t get their head around (hence why they’re only meant to be the first point of call and should make referrals based on symptoms)!

2

Hi NC88. I am new at this and am awaiting the doctor’s final diagnosis after several tests at the time. I would suggest you go see a neuorologist, specifically one experienced / specializing in MS. I first went to an orthopedist, who sent me to a range of others doctors… even though I told him the first time I saw him that I believed my problem was neurological. I finally decided to go to a neurologist on my own, who immediately sent me to do specialized brain and cervical stem MRIs, and a couple of specialized blood tests for several autoimmune diseases that have similar symptoms to MS. Do go see an MS specialized neurologist and make sure he orders the MRIs. MRIs will show if there is demyeliation in you brain and/or spinal cord.

3

Hello NC

The great problem with MS is the sheer number of symptoms it shares with other diagnoses, both neurological and otherwise. Obviously including CFS/ME/Fibromyalgia and so very many other disorders and diseases.

The problem with even seeing a private neurologist is that you have to be referred by a GP. So it’s getting that referral first.

To do that (either seeing an NHS neuro or private), write a timeline of your symptoms - those that you feel are related. Keep your notes reasonably brief, but include dates when symptoms began, as best as you can remember. Also whether any symptoms completely resolve or remain with you.

In the first instance, see if your GP will refer you on the NHS. If they are reluctant, make sure you have done a bit of research in advance, and have with you the details of an MS specialist private neurologist. Keep in mind though, that it’s not the initial appointment that is the expensive part of private healthcare, it’s the tests. An MRI will cost several hundred pounds, other tests being similarly priced.

So ultimately getting your existing family doctor on your side is really the best plan and just living with the NHS, unless you have deep pockets.

Don’t get too hung up on your symptoms being caused by any one disease (ie MS), the point is to demonstrate to the doctors your range of symptoms, history and neurological examination. Only after that might you be referred for further testing, or to a more relevant specialist if the neurologist didn’t feel that your problems are caused by faulty wiring.

Best of luck.

Sue

4

I had 2 neurologists (30 years apart to be fair) do a few fairly rudimentary physical tests who then said they couldn’t see anything wrong with me (I had explained the multitude of symptoms) only on the second go did the Neurologist order an MRI and that was when they found brain and spine lesions leading to an initial diagnosis of primary progressive MS which has since been revised to secondary progressive. So, what I’m saying is you need an MRI! Good luck:)

5

So I have had symptoms on and off for around 10 years. MRI scan showed Several demyelination lesions specific to MS, fibromyalgia ME, vasculitis all ruled out. My GP is sure MS, dr at the hospital sure MS, but cos my lumbar puncture came back negative my neuro wants to wait until October to do a contrast MRI scan which I understand is quite common to wait a full year between MRIs I feel like I have been in a relapse since last June. I’ve had one symptom after another. More recently two MS hug type things, nerve ripples down my back, butt and legs, UTI, kidney infection, I self catheterise daily due to bladder issues. I’ve had electrodes on my legs and arms tests, and the one where they put electrodes on your head and get you to watch a screen. Can’t remember what that’s called. Two bouts of ON, I’ve had just about every test you can imagine which has ruled out so many things. I have more recently had a pen fly out of my hand which was the start of a 3 hour episode of nerve spasms and a four day spasm in my groin. I’ve asked this question of my neuro who to report new symptoms to but he has been dismissive saying I don’t need to let anyone know. I’m partially sighted which started this all off, overnight I had extremely blurred vision which has never changed. Because of neuros being the experts I’ve tried asking him what else it could be, he has said probably nothing but he is saying but it’s not MS. Oh I lost my sense of smell and taste for 8 months, literally over night it went then overnight it came back but he says it’s such a rare MS symptom that it can’t possibly be because of MS. Anyway I’m babbling on but my question is what other diseases cause demyelination lesions that are specific to MS?