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)!