Husband in his 40s almost can't walk and we don't know why

[CeciliaMars]

My husband is in his late 40s and is almost unable to walk the dog anymore, can barely put his own socks on and is going to have to give up his manual job. He has pain in his back, hips and legs, but it's not the pain so much that's the problem as the weakness and the feeling that he's dragging one side of his body. He also feels 'out of line' so that he over-compensates on one side of his body as the other is weak.
He has had an MRI, scans on his back and hips - and nothing has explained these problems. He has seen so many osteopaths, chiropractors, physios etc, and although they can temporarily relieve some of his discomfort, there is no answer as to why this is happening. Husband is increasingly depressed about this and is talking about needing a wheelchair in later life.
He ran lots of marathons in his younger years, and I wonder whether he's just done damage that is deteriorating over time, but it's frustrating that this is affecting so much of our lives without any real explanation. Has anyone got any advice or been in a similar situation? Thanks so much for reading.

Wow, I'm bowled over by the number of responses, thank you! I have just googled Guillain Barre syndrome, and it sounds like this is a sudden onset acute crisis, where husband has been getting gradually worse over a couple of years. He has seen a neurologist, who has not found anything. He has had. head MRI. He hasn't had a lumbar puncture or talked to an auto immune specialist so maybe we need to go back to the GP and ask for this. A Vitamin D deficiency has also popped up during my incessant googling, so I'll look more into that. Thank you!

How long as he had this- ? there are thousands on the long covid forum with very similar issues - for some people it's actually not just minor , it's like your H

B12 deficiency also results in nerve damage long-term and can result in people being unable to walk if not treated, so another thing worth checking

Has your husband been seen by a Neurologist? Perhaps the problem is not with his bones/joints, but to do with nerves, tendons, brain?

Has he had blood tests for inflammatory markers, my husband was eventually diagnosed with reactive arthritis after becoming pretty much bed bound.

I would also suggest a Rheumatologist as his symptoms also line up with Fribromyalgia. Most people with fibro have weakness on one side and pain in hips (bursitis, gluteal tendinopathy) which restricts sleeping at night and other notable spots e.g elbows, ankles and back. Fibromyalgia is well now for it's 'pressure points' where there is significant pain apart from the overall body pain. Its onset is also very gradual to the extent on average it takes about 12yrs for most people to get finally get diagnosed as clinicians just don't join the dots together.

If when you ask how he feels he says the famous words, 'I feel like I've been run over by a truck', definitely see a rheumatogist.

I think fibromyalgia is what the presenter Kirsty Young suffers from? If you Google her you'll find her talking about symptoms and long route to diagnosis.

Sounds like my husband’s long covid symptoms. Had to give up physical job 2 years ago after mild covid infection. Has a mobility scooter now. Cognitive problems too.
Has seen and had nearly every test/specialist mentioned in thread , NHS and privately, everything comes back normal.

Most Private consultants work mainly in the NHS and do the private work for extra money outside their contracted hours.

So no that doesn't mean you're going to get any better diagnostic skills or treatment unless you go somewhere where you pay mega books to see someone who does only private work.

The problem with using a totally private specialist is they have greater expertise, more and more experience about fewer and fewer conditions - the in less so how do you know who to go to?

If it were me I would be asking to seeing a a neurologist who knows about movement disorders. Good Luck

So sorry to hear this. No advice but sometimes you really have to persist in getting answers. It baffles me how our medical system seems content to leave people to become disabled without an explanation.

@Cunty2Flaps this is incorrect. Seeing an nhs specialist in their private role can yield very very different results as with their nhs hat on they are constrained by the nice guidelines and their trusts funding regs.

I have personal experience of this with extreme wrist pain. On the nhs I was told to stop riding a bike or pushing doors open 🙄. Privately the same consultant gave wrist mri and offered an operation to remove cysts that they found.

The thing is if you're going to see someone privately then they will be a specialist. At the moment OP's husband doesn't know what's wrong so what type of specialist would he see? If you've had an X-ray or blood test done by GP that shows a problem in a certain area then that's a much easier starting point. Unless the DH has private medical insurance he could spend a fortune seeing specialists for them to say it's not neurological or whatever and send back to GP.

So I think if he's going to go privately OP he needs to sit down with GP and go through all test results done so far. other tests GP can do next to see if they can identify which specialist to see.

You are so right about nhs v private. I have tendinopathy in both hips diagnosed on the NHS. I was offered steroid injection which i said I will think about, mainly because I know someone who had had it and the pain had returned after 2 weeks. Saw a consultant specialist privately (also works in the NHS) who offered steroid injection, shockwave & PRP injection with PRP being the best for long term outcomes. I had PRP and the pain had reduced by at least 60% since then, infact its been amazing.
I did a lot of research and found that PRP injection was the best treatment for long term outcomes. On the NHS i went back and asked GP about this to see if i could have a second injection in both hips (last one was nearly 2yrs ago). NHS consultant told me the first injection could not have worked, its all in my mind and i must've done other things that I've forgotten about. There is no evidence PRP works and because of this they never offer it on the NHS! the only option i have is the steroid injection or Shockwave treatment (take your pick!)

I'm inclined to believe that these treatment options and their gross dismissal of my previous treatment are strongly being informed mainly by cost.

Did you post about this the other week?

I had similar symptoms but no pain... my legs just went heavy for want of better description. Walking was like wading through waist deep treacle and occasionally my legs would just collapse under me. Had grip issues in both hands... but as I said no pain....
I carried on as I thought it was all in my head - a huge mistake!!
Ended up being admitted to hospital for an emergency MRI and surgery. Turns out I had cervical myelopathy and needed decompression surgery on my spinal cord. By waiting I had damaged my spinal cord due to inflammation and the rubbing of the vertebrae against it.
Has left me with a limp, balance issues , foot drop and pain in both hands due to nerve damage....

So when I see people with back issues inc leg problems I see red flags and keep saying get it checked out and push for scans which you've already had done.... if any of my symptoms ring bells with you ask for second opinion

Rubbish.

Dd with knee pain - NHS - rest and shit physio. Oh, no better? Well we'll put you on the waiting list for an MRI, probably 4 months, rest until then

Private knee specialist - I think you've torn your meniscus as well as ruptured ligaments, you are a trauma case so now only 2 weeks wait for NHS MRI - diagnosis confirmed- due to nature of injuries and age and level of sporting commitments go to top of list and have OP in a fortnight.

good advice on this thread

Cauda equina?

Has MS been considered? my initial symptom was numbness and pain (mainly left side)

It sounds similar to what you described and wouldn't show in the MRIs that have been ordered as tends to be seen on the spine or brain MRIs with a lumbar puncture to confirm

I should point out so as not to worry you that there are so many treatments for MS now (many more than even a few years ago) so it is no longer the case that an MS diagnosis means you're going to be in a wheelchair etc. (I'm not and I can walk just fine now im on medication)

Not to worry you but this happened to me. Joint pain and heavy legs. I was fobbed off by the GP and sent off with painkillers for 2 months. I kept going back until they checked my blood CK levels. This revealed muscle inflammation and I am now being treated for myositis (possibly triggered post-viral) and have been referred to rheumatology, who have been excellent. I am 6 months in and can still barely move/ walk and I’m on steroids and immunosuppressants to hopefully bring down the flare. The initial delay made a big difference to the extent of muscle damage so please go back to the GP and get them to check his bloods (Creatine Kinase) for an inflammatory markers and refer you.
Hope your DP feels better soon.

How long ago did he see the neurologist?

Have his symptoms worsened since?

but it's not the pain so much that's the problem as the weakness and the feeling that he's dragging one side of his body. He also feels 'out of line' so that he over-compensates on one side of his body as the other is weak.

This immediately makes me think Cervical Myelopathy but it would be found on an MRI if concentrated on neck and back. It got missed by both a private and nhs physio and really had me thinking I was going mad. We have men in the support group for this condition. If not treated so it stops progression, it paralyses.

I would go out for a walk and then on return, like it zapped any energy I would need to lay down if my legs didn't give way. I nearly smashed my head in at the local leisure centre when I lost balance in the water keeping up the craziness of one nhs physio who said there was nothing much wrong. Nearer hospitalisation I could not put clothes on without shrieking and my backside operations lets say went numb. Bar one symptom of stomach numbness, when they gave me the info booklet before surgery I could resonate with all the symptoms. Would never have known such a condition existed.

They say it happens to older people but there are people also in the support group younger, 30's etc then my 41 years. It makes you feel life has ended.

Did your husband have the covid vaccine? Because I have suffered with similar symptoms.
I'm 2 years in and I have recovered somewhat, but doctors have looked into MS, FND, MND, Fibromyalgia and Guillain Barre for me so far.
It's different to long covid in that it's much more severe, and obviously starts within a few days of the vaccine.
I have name-changed as there is a lot of anger towards the vaccine-injured because people think we are anti-vax!
But if it sounds like it could be that, feel free to PM me and I can give you the details of a support group that has been a great help to me.

@Preparedforjobnottolast ok - for me that's made my mind up- I've now been waiting 9 weeks for an MRI. I'm going to pay! Neurologist said in early Dec my neuro responses were all ok but the fact is I'm not ok- since late September I've had weird buzzing in lower legs, especially in an evening , lots of neck pain at base of skull and a frozen shoulder - pins and needles in feet randomly but at least once a day, weird occasional buzzing in finger and an awful lot of lightheaded ness. It isn't there all the time (the neck pain is though) - I'm frightened but fed up of waiting. Neuro (and she's a top rated one)seemed adamant at61 it wasn't MS or anything similar( no falls or trips or grip weakness etc) and no real pain apart from shoulder- more very uncomfortable weird sensations - permanent neck pain and general achiness. The osteopath also thought I very probably had a cervical spinal weakness and asked for an MRI before seeing me again

@ArCost I'm afraid that's my other big worry- my issues started 5 days after my4th vaccine - I hate saying it- but I'm afraid it is the case. Whether it's coincidence or not I simply don't know