Worried about an undiagnosed loved one

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Dear All

Sorry for the late night message. I am googling and worried about my better half .
For background he’s nearly 40 and has been suffering with undiagnosed symptoms for circa 5 years . He says it hard to explain but fatigue, dizziness and an aversion to light. Balance can be an issue . Not that he has fallen over but if he walks on an uneven floor or when he went on a scooter he gets immediate physical symptoms akin to dizziness again. He can ride a bike without issue and drive fine but long distance drives of 2 hours or more bring all his symptoms immediately back.
He’s not the sort to complain but the bouts are more and more regular . He is doing well if it’s a week without them now .
I’ve badgered him to the doctors over the years . Eye test clear. Balance test - off on one side but within range . One doctor told him to drink coffee ! He’s not a complainer and in the 20 years I have known him he only took 1 sick day for glandular fever . Finally got referred to a neurologist a year ago. Spoken too on the phone and prescription for Amitriptyline. He was told it was to numb the signals . Made he feel very depressed so he stopped those within a few weeks . Didn’t take any other medications as thought he’d been living with this for so long and would wait for his follow up telephone call . I chased this a few weeks ago for him and the consultant neurologist called him a week later . He tells me he was told it’s probably MS but hard to diagnose. No cure have to live with it perhaps he could self refer to CBT. Would keep referral open for 12 months then take him off his books . No follow up appointment, never been seen in person and no scan . Last few weeks have been constantly bad for other half . He can’t concentrate, dizziness bad and he can’t cope with the noise or bouciness of our toddler . He doesn’t show it - he just has to take himself to the garage devoid of noises . Lovely man and missing out on so much rough and tumble with his son. Still working full time but exhausted. My questions really are

  • does it sound like MS? Should I push a further appointment? He’s had no letters from consultant following his calls. Doesn’t appear to be following NICE guidelines but do those apply when left in abyss
  • does he accept life as it is ? Read about DMT,s would they help ? Should he ask to be considered for this?

So sorry for the long post ! He’s the love of my life !
Huge amount of respect for all of those living with this condition x

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I am still undiagnosed so I really can’t say but some of his symptoms sound like mine but I have a lot more issues.

If all bloods have been done with docs like b12 anoemia diabeties etc then I would push for the neurologist to mri spine and brain. Be super pushy with them. I have had to push really hard for my appt with neurology but then once seen it was no issue for mri as I failed most tests there. They are the best professionals for the brain and the only one that can diagnose ms. It could be something else simple though but unless he is seen and tested properly then he won’t know.

Not wanting to be sexist or anything like that but I often find men don’t like to go to docs. He needs to go and if like me is a workaholic then the sooner he is seen the better as if it’s MS it could get worse before it gets better. Fatigue is a big thing but they say exercise helps. I can’t as I can’t breathe at the moment but I get where he is completely with fatigue.

He needs to be seen. Please push him to be seen and get the help he needs.

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I know that Covid has made getting appointments with neurologists even harder than it once was. However, in my opinion, your partner has had abysmal service by the NHS. I’m presuming it is the NHS?

So all he has had is a telephone call with a neurologist to discuss his symptoms, and not seen in person. And that he’s had no tests done, such as MRI. And just a phone call follow up. If the neurologist thinks it is possibly MS then the first thing they should do is do an MRI of the head and cervical spine. He shouldn’t be left with no further action if there is a suspicion of MS.

Go back to the GP and discuss with them how to get an MRI scan done, and how to get in writing from the consultant the outcome of the phone consultations. I presume that his GP has not had a follow up letter either from the consultant. I’d not be trusting of that particular neurologist as he seems to be the type who can’t be bothered about his patients. There is also the PALS service (Patient Advisory and Liaision Service) where you can voice your disatisfaction with the service he has been given. It might at the very least force a letter out of the consultant.

So keep pushing.

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Dear Caroline

WHAT!!!??

I can hardly believe the ‘advice’ given by the neurologist who spoke to your partner.

Probable MS, no cure, self refer for CBT, no tests, examination and no follow up!!

This (in my opinion) ought to send your partner straight to PALS (Patient Advice and Liaison Services). No self respecting neurologist should be treating ‘probable MS’ like this. (As Ziola said.)

If someone has MS (even likely MS), as has been said already, they need an MRI of at least the brain. They need an examination, ie a one to one, face to face appointment together with a physical exam. Possibly a lumbar puncture, maybe neurodynamic tests, and/or visual evoked potentials tests.

Then, assuming MS is diagnosed, disease modifying drugs. These are used to reduce the number and severity of relapses. Leaving someone with MS without DMDs is a very bad idea (unless they don’t want the drugs). Have a look at: The consequences of not treating MS - by Gavin Giovannoni It is quite a long read, but it comes from the brain and the practice of a world leader in MS treatment. Professor Giovannoni is brilliant and someone who the rest of the specialist MS neuros look up to.

Your questions are very relevant. The doctor he spoke to either diagnosed him or dismissed him without a diagnosis or in fact any likelihood of either being diagnosed or definitively not diagnosed. Yes, NICE applies, someone with potential MS should have their symptoms examined further.

Yes, DMTs are important (see Prof G’s MS-Selfie). If your partner has MS, a disease modifying treatment should be at least considered.

CBT cannot help MS. Nor can doing nothing.

Disability is not fun. MS untreated by DMDs can lead to severe disability. That’s what I live with. That’s what many of us forum members live with. The modern therapies weren’t available when I was diagnosed in 1997. By the time they were, I either couldn’t take them or it was just too late.

As Suzy said, sadly it’s the case that men are their own worst enemies when left in limbo by medical professionals. Making a fuss is a bit embarrassing. But please, get him to read these responses to your post.

Sue

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please answer i have to know. where do you live? This is APPALLING. i cant better Sues advice.

Can you afford to see a neuro privately, if so get referred by your GP. You will see one in a few days. The power of money.

BUT you can be seen by neurolgoist its not right my neurologist wanted me to go and see him the other week but it wasnt possible for me as no way of getting there.

THIS has shook me your post to be honest. To leave your husband in such a state, i am almost tempted to tell you to take him to A&E and say he keeps falling down to dizziness. It could also be heart, anything not just brain. Even ENT.

jeez i am shocked.

Oh look up Hypercusis its a real thing. (noise). xxx

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