The most intense 6 months of my life

CatastrophySam · ‎21-05-2020

I've always been a healthy and active guy although had started experiencing stomach issues back in mid 2018 which wouldn't resolve. I just put up with it after my GP told me I probably have IBS. It wasn't until I moved to Melbourne and had alot more free time on my hands that I saw a naturopath to 'heal my stomach'. I ended up losing 10kg and weighing in at 65kg at 177cm, so I was skinny but fit as I was running, cycling and keeping some strength in the gym. Around July of 2019 I noticed my breathing was harder when going to sleep which was pretty consistent so I scheduled an appointment with my GP and got a referral to a pulmonologist which wasn't until January 2020.

In October 2019 I noticed my right arm was smaller than my left (i'm right handed) and I had been having the sensation that it was 'slower' or harder to move than previous. I immediately googled this and went to my GP. He agreed and sent me to hospital. They brought me in and said they could notice it but there was nothing else to point to anything serious... "1 arm (neck), arm and leg (brain)" is what the Dr said. A few days later I woke up and could've sworn I couldn't move my toe on my right foot as well, so I went back to hospital and they admitted me. Over 5 days I underwent multiple MRIs, lumbar puncture (and a patch) and had several specialists come in and see me. The consultant neuro came in and said "there is definitely something going on here, it's either 'congenital muscular dystrophy', 'myotonic dystrophy or ALS". This sent me in to a tail spin as all are progressive neuro diseases and 1 is fatal in 2-3 years. I discharged myself from hospital and went to get an EMG for ALS (this is the gold standard for ALS). This came back negative and I breathed a huge sigh of relief and thought it was over.... it wasn't. I couldn't shake the anxiety and have now embarked on 6-7 months of therapy and 4 months of medication which has seen my side effects of anxiety reduce.

The residual still remaining are a perceived weakness in my right arm and leg which fluctuates. My breathing feels heavy, as though my airways are narrow. The lung function exam came back with a slight obstruction but nothing concerning the pulmonologist said.

Oh and I never actually fixed my stomach... I still get the runs (most of the time).

So now I'm in a constant state of anxiety which ebbs and flows depending on how I feel... I feel like the wiring in my brain has changed and don't know if I can change it back.

M1ssjess89 · ‎21-05-2020

I feel you Sam. I'm in the same boat at the moment. I feel like majority of the time I'm in a constant panic mode. I'm seeing a neurologist tomorrow. I've been getting random pins and needles, my toes feel rubbery/like they're buzzing. Convincing myself I have something bad like ms.

I just find trying to keep busy helps. I go for runs when I can or lift weights at home.

I've had gutt issues for years. All from stress

CatastrophySam · ‎24-05-2020

Hey thanks for the reply. I'm sure it's nothing. All of my results came back negative although I've got severed foraminal stenosis in a few of my vertebrae on the right side.

The worst part is not knowing what is a real symptom and what isn't. The lines are so blurred these days.

I'm also like you, in a constant panic mode which rarely switches off.

Doolhof · ‎24-05-2020

Hi CatastrophySam,

It can be difficult when we don't have a clear diagnosis one way or another and have physical symptoms of issues that concern us. I guess the main thing to do is consult with your Dr when issues present themselves.

I sometimes find that even when a Dr has done tests and told me everything is okay, my mind still tells me there are issues!

If you don't mind me asking, are you having assistance of any kind to discuss your anxiety and stress over your health issues?

Can you find some ways to help reduce the panic? Have you tried some deep breathing exercises for example? When I remember to do this, it does help me calm my body down.

Are there ways you can switch off from your mind for a while, to find a sense of peace and acceptance? Not easy either I realise, but that too does help. When our minds are relaxed our bodies are too.

Hope you find some answers and strategies to cope.

Cheers from Dools

M1ssjess89 · ‎25-05-2020

Haha same I've been told I have mild stenosis in my upper back also on the right side. I just saw a neurologist who has told me there are no red flags for anything sinister, but he's sending me to get a full body/head scan to help calm me down.

Even after seeing him, I am a little calmer but I still panic. I know you've probably heard this a million times, but I do find breathing does help me a little. I am trying to do it more frequently to try and calm my poor body down.

CatastrophySam · ‎27-05-2020

I'm seeing a psychologist every 2 weeks who deals with physical symptoms. She actually has patients who are terminal which makes me think how awful it must be for them and how incredibly lucky I am. I've been doing breathing exercises from Wim Hoff but they're so intense they put me to sleep after so I can only do them when I have time for a nap.

The others don't really work on me. They actually make my anxiety peak a little more.

CatastrophySam · ‎27-05-2020

Yeh I've got severe foraminal stenosis in my C4/C5 and C5/C6 which they never told me about until I read the MRI report and sent it to a friend who is an orthopaedic surgeon. He said it's definitely causing the issues I'm having with certain muscles.