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Original poster

What could be wrong with him?

86 replies

Gribbie · 14/08/2019 15:17

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.

OP posts:
Original poster
Gribbie · 14/08/2019 15:21

Latest blood tests showed low potassium.

Another issue is high blood pressure which started before all this so may or may not be related.

OP posts:
caballerino · 14/08/2019 15:37

I'm sorry you're going through this, it must be really scary, but it sounds like the right people are involved and taking things seriously.

When is the next appointment?

Unfortunately, fibro tends to be given as a diagnosis when doctors aren't sure what's going on and can't be bothered to keep looking. So it's a good thing the specialist has noted it's not that and referred you on.

Are you asking this question of us because you've lost faith and want to make sure you're pushing things in the right direction if they let you both down again?

Which is understandable in the circumstances. Just make sure you take anything we say with a pinch of salt! My only observation is that chronic inexplicable itching is a common sign of liver problems - but I don't know what else may cause the same thing. I assume his liver function has been tested as part of this already.

Take care.

Original poster
Gribbie · 14/08/2019 15:51

Thank you for your reply. No date for next appt yet - did ask him to check today but no reply so he's probably asleep. He had a bad night last night. Scared and sad mostly. Worried for him, me, the kids, what the future holds. It sucks.

Are you asking this question of us because you've lost faith and want to make sure you're pushing things in the right direction if they let you both down again?
Yes. I want to be sure we come out the next appt with a set of actions to ensure things don't stall. Completely agree about fibro being used as a catch it all bucket and stop looking.

I'm sure they've tested his liver and all ok. He's had so many tests I forget what it was sometimes.

OP posts:

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General health
TheInebriati · 14/08/2019 15:55

Has he been tested for Lyme? And are they considering MS?

Original poster
Gribbie · 14/08/2019 15:59

Has he been tested for Lyme?
Yes

And are they considering MS?
Was ruled out 2 years ago, but it is one of the things on our list to ask about. I've read that it doesn't always show on an MRI. It's funny how things change - 2 years ago we were dreading it being MS, now that looks like an "easy" option.

OP posts:
Original poster
Gribbie · 14/08/2019 19:21

Bumping for the evening crew

OP posts:
TheoriginalLEM · 14/08/2019 19:29

Have they considered addisons?

KindleAndCake · 14/08/2019 19:33

Hi OP, my first thoughts is MS. It doesn't always show up on an MRI early on, but as it progresses it can do. I would push that angle again.

moreismore · 14/08/2019 19:35

How did they test got lyme? The tests used in Europe are much more sensitive. NHS tests can give false negative...

Dowser · 14/08/2019 19:43

Very scary for you op
Nothing much more to add
I’m sure your mind is racing as it is
Just hope it’s sorted ASAP and he’s on the road to recovery

I know parasites can be responsible for some awful health problems. First thing I thought about when you mentioned skin itching but was not aware liver problems can cause that

RhubarbAndMustard · 14/08/2019 19:45

I was thinking MS too. My mum has it and the symptoms you state are very familiar. I would definitely push for them to rule it out for sure.

DonPablo · 14/08/2019 19:46

Low potassium can make you feel so weak. Really horrible actually. Has anyone suggested potassium supplements? Or even a potassium drip?

Poor bloke. Hope it's something simple and easily fixed.

FrancesFryer · 14/08/2019 19:46

LEM, i would assume the immune suppressants for the skin would be Prednisone and if it were Addison's this would be treating it indirectly.

Op, if he isn't taking pred, I agree with LEM, ask them to look at Addison's

DonPablo · 14/08/2019 19:47

Oh, and also looking into why his potassium is so low.

Original poster
Gribbie · 14/08/2019 20:17

Thank you all so so much

OP posts:
TheCanyon · 14/08/2019 20:19

Functional neurological disorder?

caballerino · 14/08/2019 20:25

Just a thought from a practical point of view on making sure things don't get forgotten etc (and you might already be on this) but make sure you have the name and contact details for the consultant's medical secretary.

He/she will be your way to make contact in between appointments or to chase if things haven't happened or if things change and you need to ask if the appointment can be brought forward. Much, much more effective than trying to navigate the general outpatient department if you need to chase things etc.

Might also be worth asking the next consultant if they'd be happy to give you their email address or secretary's email address for if you leave the appointment and then realise you have questions you didn't think of. Sometimes you get given so much info or asked so many questions that your own new questions based on the content of the appointment don't occur to you until you're halfway home. Or you later realise you didn't understand something.

Opening channels of communication might reduce some of the worry and pressure - appointments wouldn't have to feel quite so high stakes.

You certainly wouldn't be unreasonable to ask - I've had various consultants who were happy for me to phone or email if I had concerns or questions in between appointments. (Which I only mention because if someone had suggested it to me prior to having that experience myself I probably wouldn't have felt I could ask.)

Original poster
Gribbie · 14/08/2019 20:27

caballerino - thank you. Some great advice there.

OP posts:
caballerino · 14/08/2019 20:29

Maybe you could look at / contact any charities set up to support people with the conditions / symptoms on your radar? They often have useful info on navigating the investigation/diagnosis stage, which can also include suggestions of questions you might want to ask the doctors.

Plus emotional / practical support.

Original poster
Gribbie · 14/08/2019 20:31

TheCanyon not heard of that before. Off to read...

Those who suggested Addisons - doesn’t tick so many of those boxes. No gastro or appetite problems. No darkening of skin.

OP posts:
Original poster
Gribbie · 14/08/2019 20:32

Thanks caballerino. That’s a good idea.

OP posts:
Catbot · 14/08/2019 20:35

No advice to give OP but just wanted to give your hand a virtual squeeze. You must be so worried Thanks

ToLiveInPeace · 14/08/2019 20:36

So sorry you're going through this. I hesitate to suggest this as it's a remote possibility, but as you've exhausted many of the obvious diagnoses, has coeliac disease been looked at? The low vit D and potassium made me wonder, as it causes malabsorption of nutrients. This would be an atypical presentation (mine was too, and though much less serious) but it can cause all kinds of strange things, including neuro problems. Worth a blood test, anyway.

I'm glad your DH has you x

bobstersmum · 14/08/2019 20:39

Has he been tested for myasthenia gravis?

anunseemlylovefordustin · 14/08/2019 20:43

Those symptoms sound a lot like those that my friend with MS experienced before diagnosis. What a horrid time you're having, I'm really sorry and I hope you get some answers soon.

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