Worried about misdiagnosis

New diagnosis and before diagnosis
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Hello to you all , I’m Dave , a 40 year old guy from north wales . I’ve been having ongoing problems over the last few years , it started with a strange buzzing feeling in my leg that felt like my mobile phone was ringing but there wasn’t one in my pocket .
over the next few months I noticed I was waking up very stiff every day and had feelings of fatigue all the time, this started making me feel quite low so my G.P prescribed me citalopram to help with my mood and the pain and suggested I have full blood tests to check for lupus/thyroid/liver tests / arthritis etc and that I have a eye test to check for possible MS .
all of the tests came back satisfactory so I was told that it’s probably fibromyalgia I have and I was sent to physiotherapy whom I saw for two appointments then unfortunately covid struck .

lately I noticed my symptoms worsen , I have extreme stiffness every day , tingling and numbness in my hands and feet , a squashing sensation around my back /ribs , and struggle in the evenings as I have the most horrible sensation in my legs, I contacted my GP again and told them this and said I’d like to be referred to a pain support specialist and maybe neurologist care as I’m concerned that I’ve been misdiagnosed with fibromyalgia and it could be MS .

my GP went on to say all of my bloods and other tests that were carried out two years ago came back satisfactory and that my diagnosis is definitely fibro ,she was unwilling to refer me to see any specialists .

She said for me to stop taking the citalopram and prescribed me amitriptyline instead and said for me to see how I get on taking that .
I asked if I should wean off the citalopram but she told me to just stop taking it and I’ll be okay which was awful, possibly one of the worst mental states I’ve ever been in . Now that the citalopram has left my body I feel fine mentally but still have awful day to day pain and even find it a struggle to walk some mornings with the hip and leg pain and stiffness , I don’t know where else to go with this now .

Do you guys have any advice at all ?

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Hi Dave, if this is going to loom over you then my advice would be to either ask to see another GP and try again to request a referral through the NHS or pay to see a nuerologist privately (make sure they are an MS specialist). I had to take the latter route when the NHS nuero dismissed my case without even an appointment. It was the only way to get a seat at the table. The private appointment was in the region of £250 from memory and then i had to pay for my first round of scans which was around £900 so its not cheap but worth it for piece of mind if nothing is discovered. If it is then at least you can address the problem. Good luck

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Hi , thanks for your reply, I think I will end up going down the private route , I just feel in limbo and quite scared that my symptoms are getting worse .

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Hi Dave. I agree with the post above. I’m sorry to hear you’re enduring all of this. I began experiencing symptoms in September. I had two phone consultations with my previous GP in Nov neither of which seemed to go anywhere. Bloods were normal so she felt it was likely stress/anxiety, despite me emphasising that I was sure it was nerve related. I changed surgeries then spoke to a new GP and it was a very different outcome - she brought me in for a physical exam and referred to neurologist based on what id told her coupled with some signs reflexes weren’t right. I’m now waiting for an MRI and have been told I have signs of nervous system inflammation and MS is one of the possible causes. I’m undiagnosed as of now but I’m certainly closer - for me it made all the difference getting a second opinion. It certainly can’t hurt…

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Hi Dave

I can hardly believe your GP seriously thinks MS could be ruled in or out with an eye test. It absolutely can’t.

Often people have optic neuritis which can be seen on the optic nerve by an ophthalmologist or even spotted by an optometrist at a standard opticians. Or they can be referred for a Visual Evoked Potentials (VEP) test, which is a standard MS test, but is never used alone to diagnose or rule out MS.

Generally, a GP would either do a basic neurological exam then refer to a neurologist (or occasionally feel that their own neurological examination is sufficient to rule out neurological problems). Sometimes a GP will refer for an MRI scan and use the report generated by a neuroradiologist to rule out MS, or refer to a neurologist. They’ll never (or should never) actually diagnose MS.

Once referred and given a consultation by a neurologist, the neuro would normally do a full neurological examination, take a history and talk about symptoms, both current / constant and past. Then, if they believe there is a neurological problem, they’ll refer for tests, generally an MRI brain, or brain and spine will be done. This can be supplemented by a lumbar puncture and/or a VEP, and/or nerve conduction.

Obviously, you could go for a private consultation, but the problem there is that all the tests cost a lot. This is what Oneinthree found. It’s not the private appointment that costs a lot, it’s the tests.

In your position, I think in the first instance you should be trying to get an NHS referral to a neurologist. Is there another doctor within your GP practice who you could talk to about your difficulties and ask for such a referral? Or could you change GPs?

If an NHS referral is impossible, try to find an MS consultant in your NHS trust who also has a private practice and aim for a referral to him/her. The way to do this is to look at the neurology department of your local hospital(s). Look at the specialties of each neurologist. If you can see someone who’s an MS specialist, look up their name and your local area, you should be able to find out if they have a private practice.

Seeing a private neurologist with an NHS practice too means you might find it easier to slot into their NHS practice. If there isn’t an MS specialist with both private and NHS practices, you could still see a private neuro then with his/her recommendation, see your GP again (the neurologist would generally write to the GP with their findings and recommended tests). You may find (should find) it easier to be referred to an NHS neuro. If the neurologist didn’t think there is a neurological cause for your problems, they could at least have a view as to which kind of specialist you should see. If you do have fibromyalgia, you should be referred to a rheumatologist anyway!

Best of luck.

Sue