What could be wrong with him?

[Gribbie]

My DH isn't well and I'm after ideas from you lovely bunch of vipers what it might be and where we go from here.

2.5 years ago we moved house - me, him and a transit van. So strong, fit & healthy.

A few months after that he developed a tremor in one arm and was very very tired (sleeping 16+ hours). Had 6 months off work here and recovered somewhat. Had lots of tests and eventually ended up with a diagnosis of fibro, sleep apnea and restless legs. On meds for that (gabapentin and a few others). Blood tests showed low vit D but nothing else. MRI was also clear.

His symptoms progressed - chronic itching (said his skin was 'crawling', he has eczema and all the scratching was making it really bad - he's now on immune suppressants to get his skin under control), pins and needles, difficulty opening jars, pain and weakness.

We'd recently booked an appt with the gp as he was having more and more difficulty getting around - he now has one leg half collapsing under him when he walks, is crawling up the stairs, had difficulty keeping his train of thought or finishing a sentence, struggles with noise and light, and is very tired again. But before the gp appt came round (big wait to see the fantastic gp at the surgery) he developed double vision - one of his eyes is pointing in towards his nose. We went to A&E, as advised by111.

They did CT scan and head MRI which were both clear. We saw a neurologist who has referred him to another neurologist at a bigger hospital, with the possibility of a lumber puncture if they thought it was needed. Neurologist also said that it "wasn't presenting to him as fibro". So we're waiting for that next neurology appt. Last night he said he felt like Stephen Hawking. He's early 40s and feels like an old man. I'm scared things are progressing and we still don't know what is wrong. He's signed of work again at the mo.

I'm trying to get my thoughts together for the next appt and what we need to be asking, getting tested for. Are we in the right department or should we be pushing to see anyone else? Any help gratefully accepted.

sheshootssheimplores - last night he said he felt like Stephen Hawking. I’ve been doing that really grown up thing of being completely in denial and haven’t dare read up on it. Going to have to bite the bullet and do it.

Milomonster - another vote for coeliac. Interesting. I do so hope it’s something like this and we can get it sorted.

ittakes2 - his sleep is a bit shit. Has problems with pain and restlessness. Has a Cpap machine and meds for restless legs.

velocitygirl7 thank you. Yes, will defo be asking for coeliac test. Too many of you have suggested it for it not to be a possibility. And defo easier to deal with than some of the alternatives. Fingers very tightly crossed for something like this.

You mention your move and that the symptoms started shortly after.

Could there be something environmental in your new home / locality ?

Do you both drink the same water? That may sound silly, but I know a couple where one only ever drinks bottled water and the other is quite happy with tap water.

I appreciate that his symptoms are probably too severe to be an environmental issue, but have read about people experiencing severe health issues because of land / water contamination.

Op I had a look and MND doesn’t have any eye involvement so that’s some good news.

Many of the symptoms you describe do sound neurological though, so hopefully they will do a full body MRI and with any luck they might be able to see something (and fix it).

We only moved about 1/2 mile, to very very close to where he grew up, so no big changes there. Both drink tap water as do the kids. Xx

sheshootssheimplores you’ve made me cry. Thank you for looking for me. I’ve been in work all day and didn’t think I’d be able to maintain composure and read about it.

Something else I’ve thought of - he says he gets a feeling like he’s going to see the headmaster sometimes - real feeling of dread/butterflies and sometimes his pulse rises to 120+ when this happens.

That sounds like anxiety, not surprising though with everything he’s going through

that makes sense. Xx

Sounds very much like MS

Push for as many tests as possible so that they can find out exactly what's wrong and get the correct treatment to slow down the progress of his condition.

Good luck 🤞🏻

I know it's a very worrying time for you all but make sure you take time to rest and look after yourself too.

Symptoms match MS or Lupus, Sounds like an auto immune disease however there are so many it might take some time for a diagnosis.

So sorry you are both going through this x

Everything you describe- being very tired, restless legs, chronic itching, pins and needles, difficulty opening jars, pain and weakness. Legs going under him, brain fog/concentration problems, fatigue, double vision - every one is a multiple sclerosis symptom.

The MS Society has a free helpline - they can advise on any questions you have (even if it is ‘could this be MS..’, can help you with how to approach & get a diagnosis (or not) etc. If it is MS there is lots of advice on support - both emotionally & practically.

Neurology seems exactly the right department. Polyneuropathy seems to fit very well. I hope the following links help even a little to understand the scope of potential diagnoses. There as so many causes from right from something hereditary to being exposed to a toxin (eg: lead).

patient.info/doctor/polyneuropathies

www.nhs.uk/conditions/peripheral-neuropathy/causes/

Sounds like severe B12 deficiency to me... very similar to how I was before diagnosis, which took over a decade. Very under-diagnosed and under-treated. Regularly misdiagnosed as Fibro and MS among others. This is a good watch to give you an idea of how serious it can be

I'd be writing a timeline and all the symptoms down to hand to the doctor at the appointment- that way you shouldn't forget anything

Hi there, I've experienced similar symptoms and was diagnosed with miller fisher syndrome which is part of the guillame barre virus. It can mirror MS/ Autoimmune diseases and be hard to diagnose for this reason. I had a blood test to look for this particular antibody.

This is recoverable as are a lot of autoimmune viruses, and I really hope your husband gets better. It is difficult during diagnosis stage as autoimmune disorders etc can present differently in each person.

I wish you luck xx

Sorry Gribbie, I forgot to add, whilst I had formal diagnosis eventually, I am deficient in iron and vitamin D which can have similar symptoms to what your husband is experiencing.

Try if you can to push for a lumbar puncture as this will rule out MS, lupus, Lyme, etc and a blood test for autoimmune antibodies.

Happy to talk if you want further info as I understand 8 weeks of tests before they figured out what was wrong - unfortunately his can be the way it is with autoimmune as there are so many things out there. Xx

One thing that I can't see mentionned so far, but may be wrong as I'm tired, is Ehlers Danlos Syndrome. Has that been considered? I saw Chiari Malformation mentioned and it is one of the common comorbid conditions with EDS. Just to let you know, it doesn't always show up on standard MRI's, particularly when found alongside EDS, as it can be postural and therefore only show on standing MRI's which are rare.

Op you must be so worried.

Before dd got her DX I was worried sick and trying to figure out what was wrong near drove me mad, I'm an ex nurse but when it's a loved one emotions cloud your thinking (understandably).

It does sound like MS to me but obviously I don't know his full history but a few things spring to mind that you may need to consider to get closer to an answer:

Family history - even if no MS or whatever in the family, certain conditions may be linked or were a misdx of whatever's wrong with dh with slightly different symptoms?

Genetics - beyond the above, does he know his heritage? Certain conditions have a higher prevalence among certain genetic groups and not always the obvious/more infamous ones like sickle cell etc but eg MS is particularly prevalent in the uk among scots people. There are also a number of nutritional absorption or digestion conditions where genetics are a factor (they're starting to think this may be the case for coeliacs)

Itching can be an indicator of reduced liver function as can disturbed sleep pattern especially if he's struggling to sleep at night but sleeps better in the day. But of course it can be an indicator of many things including allergic reaction to meds.

I would suggest keeping a diary of everything that's going on BUT keep it as brief as possible, get a good hardbacked notebook for the purpose and note:

Diet (inc amounts)

Medication (type and dose but ALSO record if taken late/forgotten - not ideal practice but can lead to discoveries and let you know if effective or not)

Habits - smoking and alcohol consumption are main things I'm thinking about - not always a negative thing, sometimes smoking or a small amount of alcohol can help some things and if so its worth noting as it can give clues eg alcohol can alleviate some forms of angina, smoking can help certain bowel conditions - not recommending them for these! But recording such partaking could give a clue to what's going on.

Activity (inc any injuries or strains noted) -

Environmental - could be a trigger to his symptoms, you'd be surprised. I have allergies to some really bizarre things that can be really hard to avoid. Or has your new home been checked for pollutants, toxins or allergens? Have you a working CO detector? Is it an old house? Radon is something we had to have one home checked for, there's also moulds, fungi etc I had been asthma free for several years and then moved to a house next to a rapeseed field - that summer asthma back with a vengeance!

OR certain environments may be causing improvement and THAT can be a clue, eg many of us feel better after a day at the seaside and it's not purely down to a pleasant trip, but being away from pollutants etc if he feels better at home than when out and about maybe.

"Output" - urine - colour and frequency, faecal nature and frequency (easy enough to look up a stool chart)

Energy levels (I'd recommend a score out of say 10)

Symptoms - briefly but accurately recorded. If there are any physically visible indicators - skin colour, hair loss, change in hair colour, oedema you could record these photographically, even take a daily pic if something like hair loss occurring.

Even just for a month can help you see any patterns, minor symptoms or possible causalities. But also cos just sometimes something really daft but obvious is being missed!

Not saying this applies to you or dh (this level of daftness) but I well remember caring for a diabetic who was struggling to manage their condition, they were supposedly keeping a food diary and were indeed noting all their meals, snacks and drinks...at mealtimes - they were neglecting to include the "healthy" orange juice they were downing a litre of a day!

Also had a patient who neglected to tell us of her triple dosing herself with multivitamins - she figured they're healthy and she was feeling rotten so more must be even better right? But certain vitamins are actually toxic in large quantities and she was VERY lucky she didn't do more harm.

People can sometimes do daft things without realising - I've done it myself! Not twigging a product has changed to "new improved formula" and getting an eczema flare up, I'm also a bugger for not drinking enough and ending up with dehydration headaches - we all lapse sometimes.

"We only moved about 1/2 mile"
You'd be surprised! Even a one street change can mean a different water supplier, and the house IS different.

A feeling of impending doom CAN be a symptom of some conditions so include in the diary - epilepsy is one that springs to mind and it doesn't always present "typically" either but can present rarely as muscle/nerve pain.

I really hope you get to the bottom of this soon.

This would be a long shot but Lupus can cause some of these problems and is tough to diagnose.

I'd expect muscle weakness for Myasthenia, but quite often starts quite low-level in the eyes and usually progresses quite quickly. Bloods for MG aren't particularly sensitive for Ocular MG but could ask for anti-MuSK antibodies to be tested just in case.

Painful joints? Myasthenia is generally painless muscle weakness, some of the other symptoms don't tally but worth getting it ruled out/asking.

Another vote for checking his B12. Please check out the Pernicious Anaemia Society webpage to see about the differences in reference ranges for treatment. Good luck OP I wish you both well x

Keeping a diary is a great idea. When you go to your next appnt is would really help the consultant see a pattern of symptoms.