I’m losing hope.
I’ve been suffering a lot for the past few months and my doctor is settling on anxiety. I thought it was going well after he offered blood tests, medication changes, physio, eye tests. When they all came back normal he mentioned MS and a referral to neurology, but said he wanted to do a cervical spine x-ray first. I agreed to do it to rule things out and he said if it was clear he’d make the referral for me. I finally, finally felt like I was being listened to.
I went back for the results and they were clear, but he had changed his mind? He wants to change my anxiety medication first. Even after he lowered my current one twice while trying to figure out what was going on. And then said that neurology probably wont take me on and it’s probably my state of mind.
I’m feeling fed up and can’t understand why he can’t just make the referral. I’m constantly exhausted to the point in which I can barely get words out. My arms are weak to the point where picking up a cup feels hard. I have tingling, numbness, dizziness, I’m bumping into things and dropping one thing after the other. I’m unsteady, I have neck pain, brain fog and headaches. I don’t know what else to do.
A horrible part of me wants something to get worse just so I have a reason to go to A&E without feeling like a burden to the health system. I have dealt with anxiety for over ten years, I know what it feels like for me. This is not it.
Has anyone else had this sort of experience with doctors? I’m not sure what else I can do unless something gets worse, but I feel like I can’t live my life anymore.
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I’m so sorry you’re having to go through this and it sounds like my own experience.
My GP dismissed my symptoms as anxiety and depression.
I knew something was seriously wrong with me and not being heard by my GP certainly added to my anxiety.
He refused to arrange a MRI although I suspected I had MS.
I have a sister with this and knew the signs.
Luckily I had BUPA cover via work and arranged a consultation and MRI privately.
Multiple lesions were found in my brain and c spine with demylination indicative of MS.
I was transferred to my Neurologist NHS list and given access to a MS nurse straight away.
It took 3 years to reach a formal diagnosis when a new lesion was found and I was offered a DMT.
Do not give up keep pushing as you know something is wrong whether it’s MS or something else.
You need further investigations. Take care and let us know how you get on.
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Try not to let it get you down, I was dismissed all of 2023. With increased weight loss, food allergies , not being able to get my words out, dropping things and increased reflux. It all came to a head in December and ended up spending 3 and half weeks in hospital with a diagnosis of MS, with chronic vertigo, loss of feeling in 75% of my head/ face and most of my body was numb. I had 3 infusions of methyl prednisone, lost hearing in one ear and tinnitus. Try and enjoy today as you never know what’s around the corner.
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Possible MS - History of Cancer & Neurological Issues
My Background:
- Age 16: Ewing Sarcoma in pelvis (1999-2002)
- Treatment: Chemo & Radiotherapy
- Side Effects: Bladder & bowel damage, early menopause, infertility
- 2020: Non-malignant brain tumor (monitored)
- Other Medical Issues: Raynaud’s disease
Current Symptoms:
- Widespread muscle spasms/twitches
- Tremors
- Muscle weakness and aching
- Nerve conduction tests show abnormalities and spinal damage
Past Treatments:
- Baclofen (ineffective and dosage cannot be increased)
Neurology Appointment:
- December 23, 2023 further bloods taken and to have more nerve conduction tests. Also started on anti seizure medicine as that can help over hyperactive nerves. At time of writing they have been non effective.
Question:
Given my medical history, particularly the cancer treatment and its potential long-term effects, could the combination of these symptoms (muscle spasms, tremors, weakness, nerve damage) be indicative of Multiple Sclerosis (MS)? I am seeking insights and experiences from others who may have encountered similar challenges.
So sorry it has taken me so long to get back to you. And thank you for sharing your own story with me. It’s so awful being dismissed, especially when you know something is wrong! And with your family history it is a bit insane that your GP didn’t take your worries more seriously.
Thank god you had BUPA cover, I can’t imagine how much longer you would have had to wait if you didn’t. Also hope the DMT is making your life more manageable<3
Right now I’m on a long waiting list for a neurology referral. Got this at the start of November and hope to hear back at the end of July - just to make the bloody appointment. I’ve been having days of stabbing, electric shock pain for days on end, so I’m thinking next time it happens I’m just going to go to A&E and see what I can get from them - an MRI hopefully. But maybe that’s wishful thinking!
Thank you again for your reply!! I’ll definitely keep you updated if there’s any developments.
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So sorry I haven’t gotten back to you sooner, and thank you for taking the time to respond and share your own story<3 I’m so sorry you were dismissed for so long. It’s awful that it takes such extreme symptoms for them to finally take you seriously. I really hope the medication has made your day to day life a little more manageable!!
Right now I’m on a very long neurology waiting list ( I hope to get a call in August about actually scheduling the appointment.) Day to day life has been rough and have contemplated just going to A&E multiple times just to see if they’ll give me an MRI. Hopefully things will look up, and I’ll do my best to enjoy life despite it all!<3
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It is possible, as that’s who arranged my first MRI ( A and E) but at that time I had pain in my head like it was being smashed in vertigo, numb lips, dry mouth and eyes and urine retention. I’m so sorry to hear you’ve got to wait till August, it’s such a long way off. Try and keep positive, it does help. Thank you for your reply, and yes I do believe kesimpta is helping, just a shame I had to wait so long. You can always speak with PALS regarding your neurology appointment to see if you can get it expedited?
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I agree change GP. Request an MRI of your brain and spinal cord to look for ms.
I’ve been on all sorts of medication in my late teens/early 20s because they never took me seriously. My MRI last year was requested by a physio who was helping me with the neck pain, they gp still didn’t take me seriously when it came back with a lesion. GPs are not specialists, they are overworked and therefore don’t generally take many people seriously. They also don’t have the time to. They just ask for blood tests which will be fine generally in the case of ms… sometimes your wbc might be low when you’re having a relapse… but that’s because of a virus.
I hope you’ve got somewhere with it by now. But also don’t expect any of it to be done quickly. Medication was rushed for me after a big relapse and that took 3 months… the MRI asked for an urgent neurology appointment… that took 4 months. All I can recommend is chase it up at every stage on a regular basis because my file/referral was lost at least twice
My partner and I are moving soon so that might be a good start to getting a new GP. Although my GP said he can’t refer me for MRIs, only specialists can. Is that the case with all UK GPs? It definitely surprised me.
I ended up getting my neurology appointment after a four month wait! Which was much faster than I thought it would be honestly. I went two days ago and he said he’d refer me for a brain MRI to see if he can find any evidence of ‘trigeminal neuralgia.’ One of my many issues honestly. He said everything else should ‘fizzle out’ - even though it’s been happening for almost two years? He also threw out ‘chronic fatigue syndrome’ but said he ‘doesn’t deal with that.’ That did frustrate me a bit, but an MRI is better than nothing.
Also said the wait for the MRI is about another five months. So I guess I just have to wait for that 
I’m considering getting some mobility aids to make my life easier because I can’t stay unemployed for much longer or house bound really.
Thank you for all the advice and taking the time to reply to me, I’ll make sure I’m chasing it up. And I’m sorry you’ve had to wait so long for care you needed right away! you sound like you’ve been through it!
What really frustrates me is why can’t he just do the full MRI of the spinal cord and brain! But I really hope he finds an answer for you soon. Not knowing is the worst especially when your symptoms are so drastic. I hope your new gp listens and takes the right steps.
I also hope it’s something straightforward that can be managed with one pill! But if it is MS it’s not the end of the world, lots of support out there and the gp will take you seriously haha
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