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.

My first thoughts are MS or Parkinson’s, with perhaps a secondary condition affecting his skin.

Some of his symptoms can be explained by anxiety, which is understandable considering how much stress he's under.

I'd ask for at least 2 more tests for Lyme, the false negative rate is extremely high.

I'd also get tests for heavy metal poisoning, many of the symptoms fit. After he got ill, did he ever develop horizontal lines on his finger and toenails? You might have noticed a distinct white mark or a ridge, and it would have been in roughly the same position in each nail.

www.healthline.com/health/heavy-metal-poisoning#symptoms

rarediseases.info.nih.gov/diseases/6577/heavy-metal-poisoning

Thank you all so much for your ideas. I really appreciate every post.

Graphista - genetics - white uk, grandad is Scottish.

I've got a check list of tests to request, and illnesses to research. Will keep diary and write down timeline (had started this already). I'll keep you posted on progress. You're a bloody lovely bunch of vipers! xx

TheInebriati - no lines on nails that I recall.

He could be genetically predisposed to MS then but still a good idea to consider other possibilities and note all possible symptoms and info.

Hope you get it resolved soon.

Was he ever exposed to pesticides or other dodgy chemicals?

Has anyone suggested lupus? I just looked at common symptoms which don't sound similar, but my dad had it and it affected his walking and gave him awful skin sensations.

Not sure if this helps you or not, I have RRMS (Relapse remitting), it is very common to have low vitamin D with it. The lesions will show on an MRI as little bright white circles, the myelin on the nerves are attacked and the nerve shines through, I have several in my brain and 3 on my spine. Definitely ask to have another MRI with contrast to check again, if something is found they may want to do a lumbar puncture too (this depends on your medical trust, ours insist on both, I'm not far from Gillingham in Kent). My fatigue is horrible, my limbs feel like lead weights and trying to walk through thick custard at the same time, so I can only do one thing then have to sit down for 30 mins. Although they are not as often since being on DMT (disease modifying treatment)
Hope he gets the help he needs soon.
HTH

I also thought MS. Had he had a scan of his Brain and spine? Some people may only have lesions on their spine.

Cross posted with @Pericombobulations, most of my lesions are on my spinal cord. I have a large one on my cervical spine. Though I do have them in my brain.

sounds so scary for you both do you still have your appointment with the GP you wanted to see? I would still go and talk through with them and see if they have any other ideas or suggestions to ask about at the neurology appointment. Hope his appointment comes through soon and you get answers.