Hi everyone, I’m hoping someone will be able to offer some advice on where I can go from here. Sorry in advance for the long post!
A bit of background - about a year ago, I started feeling really ill with flu-like symptoms. I assumed I had the flu, but after about three weeks I wasn’t any better so went to the GP (after taking a COVID test to make sure it wasn’t that). The GP did some tests and determined that I had hyperthyroidism. I was put on carbimazole and eventually after some time my thyroid levels came down. I was still experiencing symptoms so I was referred to Endocrinology. As the waiting times in my area were around a year, I paid to see a private endocrinologist. He examined me and asked the GP to arrange for various tests. He advised that it was likely I had Graves disease, but that given my thyroid levels were back to normal it was unlikely my symptoms were related to this. Sometime later I also received an appointment from the NHS endocrinologist who agreed with this.
Since then I have been, on and off, experiencing a variety of symptoms - most problematic being extreme fatigue and difficulty with mobility (after walking for a short period of time it feels like my legs stop working). I have also experienced tingling/pins and needles, particularly in my right hand to the point it becomes difficult to use, although thankfully I’m left handed. Various other niggling problems.
I have been constantly in and out of my GP’s surgery for the last six months trying to get to the bottom of this. He has suggested all sorts of things it could be - viral infections, depression etc. I was even referred to a tropical diseases specialist despite the fact the furthest I have traveled in the last five years was the Costa Brava!
My GP now seems to have settled on my having long COVID. I’m not sure I have ever actually had COVID - I had one positive test in early 2022. This was at the time when we were going back into the office after lockdown and had to test before we went in. I didn’t have any COVID symptoms at all, and no further positive tests. My GP gave me details for the NHS website on long COVID for how to deal with this. I did look carefully at this and although some of the problems I am experiencing are listed there, some aren’t. Despite this, he seems convinced that it is long COVID causing the problems.
The problems are starting to impact on my work - thankfully I am able to work from home as the last time I tried to go into the office I had to get off the train halfway there and have my partner come and pick me up because I was shaking and sweating so much. They are also impacting on my home life - my partner is essentially doing everything around the house.
Eventually I got so fed up with no progress that I paid for a private GP consultation with BUPA. The GP I spoke to there was really helpful and actually seemed to listen to me and understand the problems I was experiencing. She gave me a letter to give to my GP recommending that I be referred to neurology for further assessment. I passed this to my GP but didn’t hear anything back.
Because I was so keen to find out what was wrong with me and do something about it, I eventually booked a private appointment with a neurologist. I had the consultation and he explained that they symptoms etc. led him to the conclusion that it was highly likely I was suffering from a neuro inflammatory condition, likely multiple sclerosis. This hit me like a ton of bricks - up until this point I had not even considered this as an option, knowing very little about it.
He recommended that I have an MRI to confirm this and gave me a letter to give to my GP.
I made an appointment and gave my GP the letter. He read through it shaking his head and told me he couldn’t refer me for an MRI. He said it had to come from neurology, but there was an 18 month waiting list in this area for an appointment with them. He then started to question why I didn’t think I had long COVID when I had been told this is what it probably was, and said that as I had already paid privately for the neurologist consultation I would probably be best paying for a private MRI if I still thought it was necessary. I would do this, but quite honestly I can’t afford it - I’m not on the breadline but I have already spent over £2k on private services to this point and I just don’t have the money to keep doing it.
I love the NHS and wouldn’t be without it, but I am astounded about how dismissive he was about the letter from the neurologist. I’m now left not sure where to go. I came away from the appointment with a prescription for anti depressants because he said that they can help with fatigue for long COVID and chronic fatigue syndrome - no mention of MS.
I would really appreciate any ideas or advice anyone can give on what to do now. I feel like I’m in the worst possible situation that I’ve been told I probably have MS by a specialist, but my GP is essentially blocking any possibility of having this confirmed or accessing any treatment.
Thank you in advance.