Am I mad?

New diagnosis and before diagnosis
1

Hi all, I’m new here and I feel like I’m going mad. This is a long post but I need to get it off my chest, so apologies in advance, and thanks to those who read it.

I am in my early thirties and was pretty fit and healthy. Then, last July I called 111 because I had a sharp pain in my left calf muscle and chest pains (which were terrifying). I only called to get some advice but they sent an ambulance and I was taken to A&E with suspected DVT. My blood test came back negative and they diagnosed a strain in my calf (I felt relieved that they didn’t think it was serious, and slightly foolish that I’d been taken in an ambulance and wasted people’s time). I rested up but the pain in my calf and chest continued. Then a week later what felt like a lightning bolt went through my left arm, my fingers got pins and needles and went numb and the left side of my face started to droop slightly and go numb, especially round the mouth. I went to my GP who told me to go to the stroke clinic. After a brain MRI the consultant said it was a migraine without a headache, but he also said that part of the scan was unclear and I’d need a follow up with a contrast medium to check. The follow up scan showed Perivascular Spaces but these were not significant.

I became really fatigued, to the point where I struggled to do simple tasks, I had difficulty sleeping,and I also forgot the words for simple things (despite having two English degrees) and occasionally losing my train of thought.

I’ve been back and forth to the GP so often, I’m thinking of taking a tent and sleeping at the surgery. My GP has sent me for a barrage of tests but can find nothing wrong

Some of the symptoms went away and then came back a couple of moths later and then went away again. The pain in my calf has never gone away, an ultrasound showed nothing and a lumbar MRI showed nothing significant. Chest Xrays have been fine. The pain in my chest went but was replaced by a different feeling. This may sound odd, but it feels like someone has dug two fingers behind my shoulder blade and is pressing up and into my left lung. It makes it difficult to get a full breath and hurts when my chest expands. I’ve also developed a strange jerking spasm on my left side. All of these things make it difficult to concentrate for any length of time and it’s affecting my work.

At the minute I’m booked in to see a breathing physio and have been referred to the pain clinic, but was disheartened to read that they won’t help with diagnosis, just help to manage pain (I thought they might be able to get a better sense of what is wrong with me).

I’m feeling really down as this has been going on for nearly a year and it’s affecting my life and work. I did what I try not to do and googled my symptoms and MS kept cropping up, so I thought I’d post on here. I’m not even sure why I’m posting this, I just feel like I’m going mad and need to tell someone. Does this sound like anybody else’s symptoms? And how did you approach your GP about possible MS?

Thanks again for reading,

Chris

2

hi chris

the first step is for your GP to refer you to neurology.

however you have already had an MRI.

maybe just tell your GP that you feel that it is a neurological problem anyway.

let him/her know how miserable it is making you.

good luck

carole x

3

Hi Chris,

  1. You are not going mad.

  2. GP’s and other medical professionals get Very Sniffy about people who self-diagnose. But you already knew that.

In order to make a diagnosis neurologists follow the McDonald Criteria. It’s a messy tool but the best we have at the moment. Have a look at the flow diagram at www.msbrainhealth.org/perch/resources/figure-mcdonald-criteria-1-w1200.png. This will give you an idea of what’s involved.

A list of tools used include:

  • Lumbar puncture
  • MRI of brain and spinal column
  • Visual evoked potential

But until your symptoms fit the McDonald Criteria any diagnosis of MS is unlikely.

This is the Limboland that many people with neurological problems find themselves in. It does make them feel like they’re going mad. My neurologist actually referred me to a psychiatrist before accepting I met the criteria. This has happed to a lot of people.

Best wishes,

John

4

Hi, no, I echo what John says…you are not going mad! Right?

Your body is mis-behaving…big time.

GPs and even neuros, really dislike patients offering diagnoses…theyre too full of themselves and their training to let us mere mortals tell them whats what!

My GP was very cagey about mentioning a diagnosis for my issues. They are not qualified in matters such as MS.

So you`re under a neuro…he hasnt discharged you has he? I have read here about folk being discharged and it makes me furious when an answer hasnt been found.

Guess Im lucky with that, as after almost 20 years, Im still being investigated. I was wrongly diagnosed with PPMS for a long time.

My current diagnosis of HSP is unproven. So I am a medical mystery.

I`ve had 4 MRIs, 2 LPs, 2 EMGs, plus other tests and nowt proves owt!!!

I cant walk, stand nor weightbear. I am hoisted for every transfer. I have an spc.

I have 3 carers look after, including my ever so patient hubby of 45 years…poor lad…

Hang in there chuck.

pollsx

5

Hi Chris,

As you’re learning from the above posts, not to mention your own experience, these things take a frustratingly long time.

You write… “I’ve been back and forth to the GP so often, I’m thinking of taking a tent and sleeping at the surgery.” Yep, I can certainly identify with that, as can others on the forum I’m sure.

My story is long, so I won’t tell it all. I didn’t fully cooperate with the doctors, I thought I knew better then them, and later worried that they believed me to be a hypochondriac, in fact I eventually started to believe that myself. I was wrong.

Hang in there.

Ben

6

Perhaps check out - chronic pain and anxiety disorders? OCD?

Take care.