Mobility and health update

[Amberzak]

hi guys. So I’ve not been around much.

As winter has come along, my health has deteriorated. I permanently need my stick to walk. I’m looking into getting a smart crutch and I’m getting a wheelchair for when I go to Disney in Paris in march.

I’ve been having such painful spasms it feels like my bones are going to break. My husband got scared with the last one because my fingers were all sticking out at odd angles. And I get it in my legs too.

I’ve been referred back to neurologist and I’m keeping a diary of what’s happening.

I’m on 100mg of pregabilin twice a day and diazepam when I need it. I get bad double vision some times but that’s gone now since starting pregabilin.

I had a scary one where my swallow thing in my neck spasmed and I couldn’t breath. It was so painful. And I have really bad trigenimal neuralgia.

At one point they thought I had MS but they’ve checked and there’s just one lesion on my brain and it’s not in the right place (it’s on my forth ventricle).

There was mention of other diseases but I’ve had a few tests. The common ones I don’t have.

In the last few weeks something has happened because I’m so much worse. I think it’s the winter.

 

[Amigo]

hi guys. So I’ve not been around much.

As winter has come along, my health has deteriorated. I permanently need my stick to walk. I’m looking into getting a smart crutch and I’m getting a wheelchair for when I go to Disney in Paris in march.

I’ve been having such painful spasms it feels like my bones are going to break. My husband got scared with the last one because my fingers were all sticking out at odd angles. And I get it in my legs too.

I’ve been referred back to neurologist and I’m keeping a diary of what’s happening.

I’m on 100mg of pregabilin twice a day and diazepam when I need it. I get bad double vision some times but that’s gone now since starting pregabilin.

I had a scary one where my swallow thing in my neck spasmed and I couldn’t breath. It was so painful. And I have really bad trigenimal neuralgia.

At one point they thought I had MS but they’ve checked and there’s just one lesion on my brain and it’s not in the right place (it’s on my forth ventricle).

There was mention of other diseases but I’ve had a few tests. The common ones I don’t have.

In the last few weeks something has happened because I’m so much worse. I think it’s the winter.

Oh you are having a rotten time Amberzak. I’m sorry to hear this and hope they can find the reason and help you very soon. Sending best wishes, Amigo

 

[Lucy Honeychurch]

Sorry to hear you're having such a bad time, I hope they get to the bottom of it soon and you start to feel better. Take care and sending you (((hugs)))) xx

 

[mikeyB]

All that sounds pretty horrible Amberzak. I’m sure they will have tested for this, but are your potassium, and particularly your magnesium levels normal? The reason I ask is that your symptoms don’t easily fit into the pattern of symptoms in MS, MND, or Parkinson’s, (or historically tertiary syphilis,) though I must say muscle cramps and spasms can happen in Parkinson’s, because I get them. This may sound a strange thing to say, but if you haven’t lost your sense of smell, it’s not likely to be Parkinson’s. It certainly sounds more like a metabolic rather than a neurological condition. Of all medical specialists, neurologists are the likeliest to say “don’t know”, but don’t let that get you down, the answer usually appears eventually.

Best of luck when you see the neuros again, you have to find some kind of relief, there must be something.

 

[Amberzak]

Hi Mikey

Yes they tested all that. Originally they thought MS. The neurologist did mention an ultra rare disease but nothing really came from that. She said she was waiting for signs of MS last time I saw her and discharged me but with a yearly brain scan.

I was actually trying to get gp to refer me to UCL because my friend when there and had loads of tests done (turns out she has Ehler Danlos).

The thing that made them first say MS was the trigenimal neuralgia (there’s no blood vessels near the nerve so they thought it might be demyelination) and the double vision as well as the cramps (which I later realised are spasms because it doesn’t feel like a proper cramp if you know what I mean) but no evidence has come for it being MS so they were looking into other things.

The really painful spasms where I just can’t breath because of the pain are relatively new. Also it seems to be brought on by use. ie it’s more likely to happen if I have been walking lots or it’s more likely to be in my arm when I’ve been carrying things.

I do get numbness in my arms some times but I think that’s because they are cold, or because I have to hold them at odd angles when they are stiff and hurt.

Rheumatology pointed out I’m hypermobile so should expect pain, but couldn’t explain the trigenimal neuralgia or the throat spasm that stopped me breathing, and said that my muscle spasms are more than they’d expect (I actually felt like he didn’t believe just how painful they are).

In blood tests they find always that my inflammation is always raised but can’t say way. I’ve been gluten free long enough it wouldn’t be my stomach (im coeliac).

 

[PhoebeC]

I hope you get some answers soon.
Sounds dreadful. You poor thing!

 

[Greyhound Gal]

Sounds awful. I really hope they get to the bottom of it soon for you.

 

[Radders]

Hi Amberzak
Sorry to hear you are having such a horrible time. Good to see you back though. I hope the docs can find out a what it is and how to treat it.

 

[Pumper_Sue]

Hi Amberzak, you mention brain scans have they done any spine scans? I ask because the lesions I had to start with were in the spine. Latest show on optic nerve and another in brain somewhere.

 

[TheClockworkDodo]

So sorry to hear things are so bad for you, @Amberzak and I hope you get some answers soon. It sounds like a nasty combination of bits of different illnesses, but I imagine as you're hypermobile that would account for some of the symptoms and exacerbate others, so that may be confusing the issue. I get neuralgia too but thankfully only occasionally - hope yours lets up soon, I know how horrible it can be.

Do the spasms pre-date any new meds you're on, or is there anything you started taking just before you started spasming? - I know with ME an adverse reaction to something can cause spasms (I have several friends who started jerking about like puppets after being given anaesthetic containing adrenalin, which is best avoided by people with ME), so I imagine this sort of thing might be possible with other neurological conditions, even if it's rare generally.

 

[Amberzak]

Sue, no other tests other than just a brain scan. Which is to be repeated yearly.

Thanks Juliet. I was put on pregabilin for the muscle spasms. It’s resulted in less spasms but I still spasm. Other than that I wasn’t taking anything new. The only things that changed are stress (but I usually experience stress) and the cold. I wasn’t really like this last year but it was milder, the year before though was terrible.

 

[everydayupsanddowns]

Really sorry to read what you have been going through @Amberzak. Hope you get some relief from it - it sounds very difficult

 

[trophywench]

Hear hear EDUAD - it's just frustrating for all of us - not least Amberzak herself - that we can't really help and can only offer our sympathy and virtual {{{Hugs}}}.

 

[Carolg]

Sorry to hear you are having such a bad time

 

[AJLang]

Amberzak I am sorry to hear this. I so hope that you get the help and support that you need xx