Update - Getting Worse and No Help from the NHS

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My condition continues to deteriorate, I'm now largely bedbound for most of the day as my mobility continues to get worse and I'm starting to have difficulty swallowing.

The Long Covid Clinic phone consult was a complete waste of time - same old questions and the person at the other end of the phone seemed to know nothing about the condition at all. They're not even a proper service, a virtual one - no option to see anyone and they basically just send people guides about how to manage Long Covid. I have to wait three weeks until she'll even bring up my case and see what referrals are available - it's disgraceful. I have clear warning signs of Guillain-Barré Syndrome and know what tests need to be ordered but she refused to action anything. She seemed to just want to push me back to neurology and back at my initial consult for neurology they just wanted to push me to the Long Covid people (even though it turns out there isn't really a LC service here!). I think the problem is that all the London hospitals are refusing to see anyone who fits the Long Covid diagnostic criteria in spite of the fact that they're the main avenue here and we don't have a specialist centre.

Having to take a break from university as the timeframe means it's just not going to work. I'm just incensed at so-called doctors who see nothing wrong with me having to sit around in hell for three weeks whilst they twiddle their thumbs. Every day is Hell at the moment. I continue to fight all my symptoms but it's getting harder.

Only avenues left are:
- Neurology - Had an MRI Scan, getting my GP to chase up the results and order other neuro tests (unlikely to happen though).
- Urology - a bladder examination should rule out neurological stuff (urinary retention is a sign of Guillain-Barré Syndrome).

I've booked a private consult with a neurologist who specialises in Guillain-Barré Syndrome so if anyone can rule it out it's him. Plan on going for broke trying to get some treatment for this as on the NHS I wouldn't be surprised if I'm still waiting in a year's time. Hopefully it's plain old Chronic Fatigue but even so, a proper diagnosis of that should help me see a specialist on the NHS.

 

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Hi Sci Fi can only only a sympathetic ear to and a read up to understand Guiliane Barre because it's sounds like you know what you are talking about and the least I can do is be a better educated ear.
What can we your forum friends do to make life better for you?

 

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@Maymay941 Just being here is enough. This forum's a real lifeline. Don't know if it is GBS but I want it ruled out so I can sleep easy and ignore symptoms. Hopefully this private doc can sort it out. March 1st seems like a lifetime away in my current condition though.

 

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Having to retreat to your bed after reading about this syndrome I'm concerned you should be in a hospital getting checked out.

 

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@Maymay941 Yeah. Going to keep spamming my GP surgery until they order tests. It's crazy they're doing nothing.

 

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I don't know Maymay941. The last place I'd want to be these days is in a hospital.

Sci_Fi_Fan. Do you have anyone at your home to help take care of you? Or do you need that kind of care?

 

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Since you've been telling us about get weaker for some time now and the swallowing bed bound situation for someone who we knew as a hearty sports person initially at joining NAFC can I respectfully ask if you can call for an ambulance to go to hospital based in these rapidly change symptoms in case semi paralysis makes calling impossible??

 

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Rita he is in a suburban town near London England I am the last person to want to go to a hospital but he needs expedited help.

 

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I agree. I don't wish to interject myself but I agree with May May. You really need to consider stepping the care up a notch or two. She has a point should you reach a point where you can't physically reach out without someone there could be disastrous.

Not sure how things work with Health Care in the UK but I would think a good summary to a Dr would perhaps bring about positive results.

Good luck. Either way I hope you see improvement soon.

 

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Sci_Fi_Fan - I feel for you. I have a friend in Frome who was frustrated with the NHS for trying to get mental health treatment for his son. The NHS is far from perfect! Didn't know they are also falling down on the job with long-term COVID sufferers -- and you are clearly suffering!!

 

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@Sci_Fi_Fan You may have MS. I think you definitely have something other than longhaul and it is concerning. If it gets much worse, go to the hospital, please. I agree that continuing with neuro is your best bet to get to the bottom of this. Longhaul doesn't usually cause symptoms as intense as yours, nor so many systemic symptoms. I think you probably have an auto-immune disorder. I'm sorry to hear about your horrible ongoing problems, particularly the part about missing school and being bedbound. Sounds terrible. So does the NHS! I wish you all the best with your private appointment.

Have you consulted with the others here who have MS, to compare your symptoms?

Guillain-Barre is rare; MS is not. If there is any chance you have MS, you ***MUST*** get it under control as much as possible, as urgently as possible.

https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Swallowing-Problems

 

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Thanks for the replies guys!

I'm getting my Dad to drive me to the A&E of the main neuro hospital in the area on Monday. 5 full days of people being in should get to the bottom of it. I'm not at death's door but I just want everything ruled out so I can sleep easy.

I've also asked my local GP Surgery to book the tests I need done but I think there's more chance of pigs flying. Going to prep/pack fully for my potential hospital stay so it's more bearable than last time. My GP in Dorset referred me to the Acute Medical Unit (a sort of fast-track A&E) and I'm going to see if they can do the same here but it's unlikely. The issue is we don't have a neuro department at the hospital, it's in London so I don't know whether they'll refer me there or locally. After last time in Salisbury, I learned there's no point being in a hospital without the necessary people as you just end up lying there for days waiting for them to come in on their one day. If not then my Dad will just have to drive me there on Monday.

@snow MS was has been ruled out and the reason it could be GBS is, whilst rare, it does seem to have a link with Covid. A medical worker I saw commented that my presentation was the same as a colleague of hers who had GBS after Covid. It also isn't usually diagnosed via an MRI but via other tests. The symptoms seem to mimic Chronic Fatigue but with one big exception - mobility gets worse over time which is what's happened with me.

I don't know though to be honest and it's crazy I've had to do all the research when we pay doctors to do that but c'est la vie. The bottom line is there are three tests that need to be done but everyone seems more concerned with me having blood tests every two seconds.

 

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Thank you for the update Sci Fi
It's not our place to tell you what to do but to support your decisions to and want the best health for you!
Well done!

 

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It's the not knowing and having to wait that makes every health issue cause us anxiety. Meditate, meditate.

 

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Going to head to University College Hospital A&E tomorrow as it isn't getting any better. Hope I may get some answers and some treatment. They've got the biggest neuro department in the country so if anyone can get to the bottom of it it's them.

 

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I'm so sorry you are dealing with the issues but glad you are going to the top of the chain

 

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@Sci_Fi_Fan Best wishes for your hospital stay! Please keep us posted!

 

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Might I suggest you write a summary to show doctors
I was in robust health and sporty or moderately healthy. Or low energy but functional what ever was the case for you, returned from X country teaching because of x health issue or what ever reason in 20xx
Increasingly weakness ( or symptoms )from 20,xx with worsening incontinence
Incontinence since childhood sporadically now uncontrolled (urinary fecal both?)

Covid in 200xx and started to use cane then wheel chair in 20xx currently in bed with swallowing difficulty etc
Current symptoms and fatigue level.
This is a bird's eye view of your situation. They can read medical notes themselves at "leisure"
The point being the situation didn't just happen

 

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Also, current meds.

 

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Thanks guys! Yeah, I've written it all out. Speaking is hard at the moment and due to brain fog I get muddled anyway. I don't know whether they'll admit me but it's worth a shot. It's the only avenue I've got left at this point.