The journey to diagnosis- My Story

My first diagnosis was in 2017 when I was diagnosed with Psoriotic Arthritis (PsA) followed in 2021 with Inducible Laryngeal Obstruction (ILO). I will blog about each condition separately to give more information. Looking back my symptoms started many years before this. Over the 25 years prior to diagnosis I would get random joint pain. I'd visit the doctor and be given pain killers, told nothing was broken and to rest up. Whenever I caught a virus it would take me ages to get over it with massive amounts of fatigue. At one point in my thirties the GP did make a reference to Post Viral Fatigue but nothing further was done.

In 2017 I crashed. With a number of unrelated symptoms, pain, exhaustion, blurred vision, falling over and just a general feeling that something was wrong. I was also going through a marriage breakup that left me as a single mum with an 8 year old daughter trying to work full time shifts. I just couldn't carry on and had to take a few months off work. I was lucky to have a really good GP. Initially I was referred to a neurologist. After a clear brain scan he talked about it being functional neurological symptoms along with Fibromyalgia. My GP wasn't convinced on this diagnosis so sent me to rhematology at Royal Derby Hospital for a second opinion.

That day in December would change everything. I walked into the doctors office expecting once again for someone to say they didn't know what was going on. This appointment was different, she sat with me and went through the symptoms and then checked all of my joints. She then brushed my hair to one side and spotted a small patch of psoriasis which she asked about. I had Posoriasis as a teenager and luckily only now get small patches when I'm run down. The small patch on my eyebrow was the missing clue that lead to my diagnosis.

The second diagnosis of Induciable Laryngeal Obstruction was another long battle. As a teenager I would always get a cough at times of stress. I was always the one coughing and chocking in exams at school. Nothing helped. In 2009 my GP diagnosed it as asthma and started me on steroid inhalers. Although they gave some relief I would still have times of choking and also had some really severe chest infections that took time to go away.

This reached a crisis in 2020 when we were in lockdown. The chocking got worse to the point that I couldn't eat without chocking. Once we could go out it was horrible as every time I chocked people would look at me suspiciously obviously wondering if I had Covid. Again diagnosis took time. Initially my GP thought it was related to asthma so sent me to see a respiratory consultant. Well I say see - it was all telephone appointments where the consultant told me the xray was clear so maybe I should try and loose weight.

Once again after going back to my GP in bits she sent me to ENT. I already have silent reflux so she wondered if it was related to that. They asked me to see the speech therapist who suggested the ILO diagnosis and sent me to see a specialist professor that he worked with. There I discovered that I had ILO and that it was unlikely that I had ever had Asthma. There isn't treatment for ILO and the choking fits will continue but I've been taught how to try and control my breathing to prevent them getting worse.

The journey to diagnosis isn't easy and often there are wrong turns along the way. This is where having a life coach is so useful to help you navigate this winding path and to take in all of the information you are being told. I just didn't know what questions to ask the specialists. I think I was just in shock and out of my depth.

If you are on this journey ask about my new diagnosis coaching programme. I will work with you over a 3-6 month period, guiding you along the path, helping you to find the right questions, how to find out what you need to know about your condition, and most important how to learn to thrive with the condition. Please contact me for more information. I look forward to working with you.