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.

All of the symptoms except the eye pointing to nose could be linked to fibro, but need investigating anyway and not just be dismissed. I know fibro suffers can also be affected by Bell's palsy- which can make the eye of one side droop/point a different direction, but often affects the whole face on one side.

Thank you CatBot - you all need to stop being so nice now or you’ll make me cry.

coeliac disease - hmm. Not considered that. Does tick some of the boxes. Defo worth looking at. Thank you ToLiveInPeace

myasthenia gravis - we’ve looked at this since the eye thing. But his symptoms are mostly in the big muscles not the little ones so didn’t think it fitted so well. Of course we’re assuming everything is related and it might not be. Thank bobstersmum. I’ll read more.

sohypnotic - no droopiness. The dr checked for that. Yes, we’ve been ok with the fibro diagnosis and treatment has been helping. But the progression and recent change has us questioning everything.

Definitely insist on second opinion re: Lyme.

anunseemlylovefordustin another vote for MS. Yes, it does tick so many boxes there.

AllOuttaIdeas I will do. Will see if we can do the non NHS test.

Sounds similar to my MS symptoms, my question is, was his MRI just of his head? I had nothing visible in my brain mri, but also had a spinal MRI which shows multiple lessions. My symptoms are similar in pins and needles, itching and leg weakness, so if his MRI wasnt far enough they could have missed them?

Has he had vit b12 tested?

Muscular dystrophy? Several variants, some start to show in adulthood rather than from infancy/childhood.

Just a thought, but really hope you get answers so you can make a plan of next steps. Best wishes.

I'm not a medical professional, but my nan had many of the same symptoms including chronic itching, restless legs, difficulty opening jars and her legs used to give way underneath her. She was eventually diagnosed with Parkinsons disease. I hope you get to the bottom of it soon.

So sorry to hear. Has lupus been ruled out? A lot of these are sounding like my initial symptoms. Hope you get some answers soon

You've had neuro investigations but every symptom you've quoted is DH - who has chronic heart failure , 20% function and several strokes, itching is caused by diabetes.

please read this and request a test for Coeliac disease

www.coeliac.org.uk/information-and-support/coeliac-disease/conditions-linked-to-coeliac-disease/neurological-conditions/

Probably not responsible for all of the problems, but low potassium and high BP you should really rule out Conn's syndrome. Unlikely to be causing all the issues but I'd want it checked, especially if renin low.

Pericombobulations yes, just head mri. We were planning asking for neck one too. I hope you’re doing ok. Xx

To chuck another possibility into the mix, my sister has a condition called neuro-myelitis optica. It presents similarly to MS but is not degenerative. She had many, but not all of those symptoms. Got her diagnosis after around 10 years of symptoms and is now under John radcliffe hospital in Oxford. The optica refers to the danage it can cause to the optic nerve, she has slightly altered vision (think the cones, so she sees black as brown or something).
Don't know if this is helpful or just one more scary condition thrown in.

30not13 - vit b12 I think so but will check.

littlrwilts - has a quick read of muscular dystrophy. I don’t think it’s this but will have a proper read.

ReginaGorgeous - we did wonder about Parkinson’s early on when the tremor started. But that was ruled out by the dr. Defo worth looking at again though.

lolbrador - I think go checked for this in the beginning. Need to double check though. Does fit some of the symptoms.

Has anyone spoken to you about Chiari?

A friend has both that and MS and your husbands symptoms sound just like hers.

I hope you get some answers

IAskTooManyQuestions - my MIL has adult onset diabetes. Can get her to check his blood sugar tomorrow.

McHorace - that was interesting reading. Will defo ask about coeliac disease.

georgedawes - thank you. Defo going to ask to be tested for this. He’s on several blood pressure meds and it’s barely controlled with them.

Lovestonap - I’m going to push for spinal mri and lumber puncture. And check they test for this as well as ms. Thank you.

adaline - i think this would have shown up on mri? Maybe they weren’t looking for it though. Will ask.

Thank you all for your suggestions. I have many open tabs and will do some reading before the appt.

i know this is the worst possible possibility OP but if you google early symptoms of motor neurone disease it sounds really similar.

I’m so sorry you are going this. I came here to suggest celiac. I was working with someone recently who was bedridden and partly paralyzed. Docs in her country couldn’t figure out the cause until her blood results were shown to a specialist in the UK, who said celiac. She’s now absolutely fine since changing her diet. I really hope you get answers. Sending you both strength.

I'm sorry but I thought of parkinson's disease too. Can I ask is his sleep affected? I did not have as extreme symytoms as your hubby but I had some similarities - was diagnosed with developing fibro and had really high autoimmune readings, pins and needles, sometimes my skin feels like something is biting it and electrical buzzing feelings, sometimes one eyelid flickered - was so fatigued could not walk very far. Melotin helped for sleep (I'm off it now) as doctor felt I wasn't going tinto a deep sleep and therefore not healing. Highly recommend acupuncture, continue with the vit D and also try fish oils. Hope you get to the bottom of things. I think the most important thing is to google ways to reduce his inflammation - diet also plays a huge role.

I'd also ask for a test for coeliacs but don't cut out gluten prior to testing.
The malabsorption of food is a big sign and it can present in so many different ways. I hope for your family that it is coeliacs as going gluten free literally transformed my physical & mental health within days of being diagnosed and changing my diet. Far easier to deal with than some of the other conditions mentioned on here.