Getting assessed for long covid by Neurologist

I care for my wife who has been diagnosed with MS for 38 years and assessed as secondary progressive 11 years ago. During the last 11 years she has been fortunate. Although in wheelchair she could still transfer (with help); was continent, rarely suffered pain or spasms and usual fatigue. In March this year (2022) she contracted Covid. Whilst the actual symptoms of covid were mild (she did not receive any antivirals) she has had significant changes to her quality of life. She now suffers from constant joint pain; increased fatigued, doubly incontinent, cannot transfer, frequent spasms, sight issues and memory problems. I have been pushing GP to look at this as potential long covid symptoms (as research suggests). Eventually got phone consultation with MS who thought Neurologist assessment may be prudent. We were over the moon. Someone was finally listening. She said she would arrange video-call from consultant the following Wednesday (5 days away) and we should hear from Consultant Secretary to arrange video-call. Having heard nothing by 4pm the Tuesday before the Wednesday appointment, we contacted MS nurse. She claimed she had been meaning to call us. The consultant had decided not to arrange the assessment appoint. He was keeping his appointments for people who could be given treatment. He suggested, via the MS nurse, that our General Practitioner would be able to medicate/manage the symptoms described. No disrespect to our GP but he is a “generalist”. I asked if the consultant would be writing to our GP to suggest possible treatment/management options. She said no contact with GP was planned.
To say we were flabbergasted is an understatement. With such life changing effects I would have thought an assessment would have been a reasonable professional approach with a proper clinical diagnosis of signs/symptoms. If, after the assessment, he had delegated to GP we would have been more comfortable than the “expert” had assessed the situation properly. Instead, we have been left in “no-mans” land. We have not been able to see our GP and there seems to be no medical management of my wife’s concerns.
Is anyone else having similar problems?
We are all used to “MS” being used as an excuse for any symptom. However, with research showing increased Long Covid symptoms amongst MS sufferers, why are the medical fraternity turning a blind eye.
I am at my wits end in terms of what to do. How do I get my wife properly assessed and given treatment options to help ease/mitigate her life-changing symptoms?

That’s a terrible state of affairs and my commiserations to your wife.

I would escalate the situation with the hospital. Your MS Consultant is part of a chain of command and he will be answerable to someone else in the Neurology Dept and so on. This is a clear case of your consultant passing the buck - or attempting to, at least. The hospital would also have a documented complaints procedure somewhere which you should either use of threaten to use. Worth asking for a second opinion too, though that may be step 2.

There is plenty of evidence to suggest that MS sufferers, like those with other autoimmune conditions, are at increased risk with Covid-19. Just take a look at the attention given to Covid by Prof G (Gavin Giovannoni) among others. Covid impacts MS folk more and causes complications in the administration and efficacy of certain MS treatments - this is most definitely NOT something that the GP could do better.

Keep pushing back - your MS team are not serving you!

Sorry to hear that your wife’s ms symptoms having contacting COVID have changed. As Graeme says you can push back.

I can appreciate that when you are in dire straights it adds more pressure but sometimes you have to be your own advocate.

In addition to what Graeme suggests you could ring your consultants secretary and state your worries and concerns. It might be that your consultant hasn’t the full picture. She may on your behalf drop him a line.

Perhaps you could ask if he isn’t having consults with existing patients, how can you be sure that the symptoms your wife is experiencing are COVID related or new ms symptoms; surely the later would need an assessment.

You could also ask, bowing to his knowledge what medications would he recommend that he could send you in an email and then you present to your doctor.

You can also go through the hospital PALS service who could look into this for you.

These suggestions are sent with good intent. I’m not an expert but have tried all of them, some successful than others.

Thank you Graeme and Rogue for your response and understanding. I agree that I need to contact the Consultant and gain his point of view. I am planning to call the Neurologist secretary tomorrow and see if I can organise a chat with the Consultant (he is the sole Consultant in the Department). If that does not happen I will ask to be put in touch with the “Concerns Team” (which is same as PALS) to take the matter further.
I shall feed back how I get on.
Thank you for your support and advice.

I telephoned the Neurology Secretary this morning. Either she was “very on the ball” or there had been feedback of our concerns via other health professionals but she new my wife’s name and details immediately. She was disappointed that we had been left with the impression that my wife was not to be seen. Whilst it had not been classed as “urgent” by the Neurologist, he had apparently left instructions for her to book my wife in for a video-call in a few weeks time and I was given the date of that appointment over the phone. I have taken this new information at face value. We are very relieved that this seems to be a simple case of miscommunication (it was not what we were told my MS nurse). I am just glad that my wife will be assessed. Pity that could not have been made clearer at the time.
Again thank you for pushing me to contact the Department, your kind words and support. Touch wood, my wife will get the treatment and support she undoubtedly needs after a proper assessment.

Outstanding outcome, well done! :+1:

It’s just a shame that we have to end up harrying our professional teams for information.

Great result, you certainly had nothing to lose but everything to gain by ringing the consultants secretary. Well done. Make sure you let us know how you get on :blush:

Recently had video consultation with Neurologist on 16th June (with MS nurse in attendance) for my wife. The neurologist did not mention previous difficulties - and I thought it prudent not to either and decided to just “move on”.
He seemed to think, and focused his opinion that the MS had flared up due to infection. He did not want to suggest it was anything to do with “long covid”. He thought my wife should start recovering some of her abilities soon. had she noticed any improvement - no!
I had to point out that she was in excruciating pain, could not transfer and her quality of life had severely deteriorated. I described him as the “Admiral of the Fleet” of the multi-disciplinary team treating my wife and should have a complete overview of her symptoms and treatments being organised. Could the pain in her hips/back be due to MS, Long Covid or something else. Should/could that not be investigated?
He eventually agreed to have her hips investigated by X-ray to rule out physical damage.
When I suggested some physio, he also agreed he could organise that. When I asked about her tremors and spasms, he discussed some alternative medications which she could try.
In doing this he said he felt he was not just the Admiral of the Fleet but “the tea-boy running around handing out cakes”.
I pointed out the real-life difficulties in getting to see any medical professional, whether in primary or secondary care. My wife had not seen our GP at all in past 12 months (other than when he popped his head in to consult with practice nurse). Our Primary Care experience has been provided wholly by the practice nurse.
He agreed that there seemed to be a “disconnect” on the relative roles within Primary and Secondary care. Apparently, every second patient was telling him this.
We have yet to receive our copy of his letter to our GP outlining what was to be done and/or his recommendations which he promised. We have received an appoint from radiography for hip x-rays. There have been no feedback from GP to suggest changes to medication and/or physio referral to date.
I suppose the consultation is a start. We shall see where it goes. I do hope that there is follow-up on the actions agreed, If not, I shall continue pushing.