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LollyW

Help! Anyone else have these symptoms?

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Nindancer

Pre-diagnosis I was referred to an ophthalmologist when I had an eye test. Apparently there was nothing wrong tho.

After diagnosis the optician referred me to eye A&E (I didn't even know there was a separate A&E for eyes!) and they said PVD (I think that was it) so basically age.

I then had to refer myself when I was having issues - that's when they said I have nystagmus in both eyes.

I think the nature of MS does mean some problems come & go but yes, the optician would probably notice anything unusual :what:

Sonia x

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Sluggish
Marina

As I've always worn glasses, it was normal for me to have an eye test every so often anyway. Whilst i was in limboland, and when having some vision problems at the time too, my optician's found a mild ON.

 

I went to my neuro (or maybe it was my GP) with it, who then referred me to a consultant opthalmologist, who referred me to an optometrist at a hospital for a VER, and he also referred me to an orthoptist, who found I had a had a mild nystagus and a couple of other things.

 

There was a recent topic about vision here: http://ms-people.com/forum/topic/23733-double-vision/

 

It never hurts to have an eye test at the best of times :flowerface: so maybe try to book yourself in for one?

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Marina

(belated DX in June '05, SPMS)

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Marc

As I've always worn glasses, it was normal for me to have an eye test every so often anyway. Whilst i was in limboland, and when having some vision problems at the time too, my optician's found a mild ON.

 

I went to my neuro (or maybe it was my GP) with it, who then referred me to a consultant opthalmologist, who referred me to an optometrist at a hospital for a VER, and he also referred me to an orthoptist, who found I had a had a mild nystagus and a couple of other things.

 

There was a recent topic about vision here: http://ms-people.com/forum/topic/23733-double-vision/

 

It never hurts to have an eye test at the best of times :flowerface: so maybe try to book yourself in for one?

 

Like you, I went for a routine eyetest (this was over 10 years before diagnosis) and the optician spotted something that concerned him so referred me to my GP. Before I got to see my GP however, I started getting blurring in the middle of my right eye. By the time I got a referral to the hospital, this worsened. No mention of ON was made though. Instead, I was told that I had a partially detached retina.

 

I was given laser surgery but, needless to say, it didn't have any effect. I was only after diagnosis of MS that the link was made.

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It's not the hand I wanted to be dealt but I'll play it anyway.

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LollyW

Thanks guys. Informative and helpful as always :-)

 

I'll book myself in.

 

Lolly x

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LollyW

Hello everyone,

 

I hope you are all ok and enjoyed the rest of the summer. Prepare yourselves, long post on its way :-)

 

I have missed posting messages and receiving your positive and cheerful responses. However there's no real update with me. Have a brain MRI a week today, 6 months since my last one where they found white matter so we will see if there's any change.

 

I started to feel much better and my neuro symptoms really seemed to have settled down in August. I was, and still am, taking Gabapentin and Duloxetine. So I returned to work at the start of September at reduced hours.

 

I was really enjoying my return to work and the pressure was off, my employer has been very supportive :-)

Unfortunately my return to work didn't last long, only it wasn't the neuro symptoms getting in my way this time...

 

I was sat at my desk engrossed in a task when I had sudden chest pain. Not severe but enough to stop me in my tracks. I took a break but it wouldn't go. I tried taking pain killers as by this point the pain had radiated into my back so I thought I'd maybe been sat funny for a while and I was having muscle pain.

 

20 mins later I was feeling the same only I'd gone very dizzy and my colleague took one look at me and insisted we visit the first aid room. Luckily that day our chief nurse was onsite for a meeting so she rushed in to see me. She gave me the once over and said we needed to call the paramedics in. Great!!!

 

Following an abnormal ECG on the paramedics arrival, they rushed me in on blue lights with suspected heart attack. Being 33 with 2 young children you can imagine the thoughts running through my mind. The rush to the hospital is all a little hazey now but I remember asking the paramedic "am I going to die?" Very scary.

 

When I arrived at hospital it was like a live scene of Holby City! The cardiac team were ready and waiting and performed an Angiogram as soon as we got there. Anyway, after several tests and finally a heart MRI, heart attack was ruled out and I was diagnosed with Myocarditis. It's inflammation of the heart muscle and a pretty rare condition. After a week on the Cardiac Care Unit I was discharged as an outpatient. I have a repeat MRIon the heart mid November. The heart should repair itself in time and there's no reason why I shouldn't make a full recovery.

 

Since the Myocarditis I have had a flare up in my legs and feet of my neuro symptoms :-(

Aching and itching on the inside. I'm still taking the Gabapentin and Duloxetine but am also taking a few medications for my heart now.

 

What I find really strange is I am now getting the same internal itching sensation in my chest and across the top of my back, similar to what I get in my legs and feet. My cardiologist doesn't seem to think there's a link between my neuro and heart problems but I am not so sure. I've read autoimmune diseases can cause Myocarditis so maybe there's a link there.

 

I can't help but think maybe the Gabapentin is playing a part in all of this. My cardiologist never got to the bottom of the cause of my Myocarditis. I've looked through my notes that I was making earlier in the year when all my neuro stuff started and although the aches and pains were there before I started the Gabapentin, the internal itching sensation wasn't as prominent.

 

I have requested a phone call from my Neurologist as I want to ask in his opinion, does he think there could be a link between my undiagnosed neuro symptoms and my heart problems. And most importantly, could this be a result of the Gabapentin????

 

Sorry for the long post. I feel like so much has happened out of the blue this year. Struggling to get my head around it all if I'm honest.

 

Thanks for reading guys.

 

Love lolly x

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Nindancer

No idea Lolly but also had abnormal MRIs, then perfectly normal when referred to cardio team x

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Sleepy
Scully

Hello Lolly,

 

Oh my, so sorry to hear all this, you poor thing. Hope you are on the mend now though.

 

Think there are some reports of both Gabapentin and Pregabalin causing some heart problems, but apparently it is very rare, almost negligible in fact..

 

Having said that it seems that Myocarditis is mainly caused by various virus', and it seems in some cases, the cause may not be found.

 

See here. https://patient.info/health/myocarditis-leaflet

 

Did your cardiac people not mention what they thought the cause of this may have been ?

 

Fingers crossed you'll feel better soon, and get to the bottom of everything.

 

Scully

xi


Edited by Scully

They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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LollyW

Hello :-)

 

No there was no mention of the cause of the Myocarditis. I think with that particular condition a lot of the time the cause is unknown.

 

I can't help but wonder if there's a link but I guess I'll have to be patient and await further tests. I have tried calling my Neurologist this week but he hasn't returned my call.

 

Seeing my GP this afternoon as will need to be signed off work again. Chest still tight and neuro symptoms made an appearance so certainly not ready to return to the office! I'll ask his opinion about it all.

 

Ended up taking tramadol last night for the chest and leg pain. Worked well but not keen on taking that too often.

 

Thank you for the link Scully.

 

Lolly x

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LollyW

Good evening all :)

 

its been a while since I’ve posted anything on here so thought I’d say hi and give a quick update. I hope you’re all ok. 

 

At the start of the year I was diagnosed with Functional Neurological symptoms and am now undertaking CBT in the hope to make my symptoms more manageable. I have had a good run these last few months but have recently seemed to relapse :(

 

my leg pain is unbearable, my nerves are twitching and I’m feeling buzzing in my right foot. Bladder and bowel problems and a constant headache amongst other things.

 

I have contacted my neurologist who hasn’t been in touch since my diagnosis as I’m just not feeling convinced about my diagnosis. I’ve asked that I be retested for other things again now that this has been going on for 17 months with no improvement. 

 

Has anyone else had negative test results initially, Lumbar Puncture, MRIs etc but then later the tests have been positive and you were later diagnosed? I feel so alone now I’ve relapsed. My therapist is lovely but she doesn’t know about FND so it’s difficult to discuss this with her. 

 

If my current neuro isn’t willing to retest then I’m thinking I might get referred to a different neuro at a different hospital for a second opinion. 

 

What do you guys think? Feel like I’m going mad. 

 

On a positive note my cardiologist is happy that my heart has fully repaired. I have another scan in May 19 just to check it’s still ok. 

 

Thanks for reading. 

 

Lolly xx

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Sleepy
Scully

Hello Lolly,

rewlly nice to hear from you again and pleased that you’ve had a run of feeling well. Sorry to hear that you’re now going through a rough patch.

 

I think it’s fair to ask to see your neurologist again given that it’s been some time and you are now feeling rough again.

 

As is our normal advice here. Start keeping a diary, each day, list how you are feeling, pain, tingling, fatigue etc. Take it with you, let him examine you and then see if he thinks, based on how you were when he first saw you to how you are now, and the diary symptoms you take with you.

 

There are cases where a diagnosis has been 'missed' before, and then detected months or years later...I know Marina, who owns this forum is a case in point, so it may be worth checking the 'pinned ' topics here are trawling through there, as I’m sure there are others.

 

My personal choice should be to keep an open mind, don’t try to pre-empt what you Neurologist Mary or may not say, and concentrate, if you can, on getting this latest patch reassessed and sorted out?

 

As always, do keep posting and do keep asking questions here. It’s fairly quiet here of late, but some of us are always around.

 

Scully

x

 


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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