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MS or Over reaction.......

New diagnosis and before diagnosis
#1

Hi there

I have a friend who has a mother with PR MS and she is desparate for me to make an appointment with the docs to request a referral to Nuero. So, before I look like a complete idiot in front of my doc, I thought I would run it past your guys instead (less chance of looking foolish!) I shall try to be brief, but I apologise if I start waffling.

About 18 months ago now, I got fuzzy vision in my right eye and had problems with colours (especially red). Made appt with opticians who mentioned optic neuritis and requsted hopital appt. 2 hospital appointments later was sent for MRI to check for optical neuritis. MRI was about this time last year and the results showed that at the time of the scan, there was no inflamtion to the optical nerve and NO demylination. Vision never really fully recovered - everything is still a bit fuzzy and I still every now and again have colour differences. It gets worse when I excercise or take a hot bath. Opthamologist said they dont really know what is wrong with my eye (I could go for electrical impulses tests) and if I can live with it, do so and have been discharged.

April last year. All of a sudden and not for very long, lost the ability to speak coherently. Thought it was hilarious at the time as I sounded drunk (I rarely drink), but GP didn’t find it nearly as amusing and sent me to the local TIA clinic in case of a mini stroke. Had all the relevant tests inc ultrasound of corotid artery and was told there was no reason for it so dont worry and call 999 if it happens again. Was discharged.

September last year. Developed palpitations where resting heartbeat was in the region of 120 and on exhertion 150+. Continuously. Sent via GP to cardiac guys. All ECG’s recorded normal just very fast heartbeat. No problems noted on an echo either. Had 7 day ECG and again, all normal, just very fast. All the time. No apparent reason for it. Cardiac thought that maybe my asthma (I am a sufferer) was bothering my heart, referred me to chest and as there seemed to be nothing much to worry about, discharged me. The referred me to chest as…

October last year. Had what was suspected to be a severe asthma attack and was taken to hospital - had another one in December and ended up in hospital again have had a few minor ones in between, but have avoided calling 999. Saw chest doctor who said he didn’t think it was asthma and have been sent for various tests. My symptoms were very tight chest (as if I was being squeeeeeezed) and difficulty breathing and taking deep breaths. It never seemed as if the breaths I were taking were satisfying - for want of a better word. I would get back pain across the left, kind of bra strap height, and have presumed it to be muscular from trying to breathe too much. My ventolin didn’t seem to do much, but the hospital nebulisers did. Have been left very tired and exhausted from the breathing/heart stuff and for a while the very short school run walk was too much for me to cope with. Energy levels have since vastly improved (have good days and bad), but my fitness is still nowhere where it was before Oct.

and lastly, have had for a while an area on my forehead that really really hurts if I touch it. If I don’t touch it, it is ok. It only ever bothers me when I am cleansing my face or lying wonky on my pillow. It is a burning stabbing pain that radiates from the area. But it is absolutely fine if I don’t touch it!!!.

So that is about it really. It all seems a bit silly now I have written it all down. I don’t think it is anything really serious, but it was ringing alarm bells to my friend so I promised I would speak to my GP. I hope I kept it brief enough for you but included enough info to actually make sense. lol.

To Doc or not to Doc???..

All the best.

#2

To Doc.

Hello and welcome :slight_smile:

Your chest thing sounds like it might have been the “MS Hug”. Having it does not mean that it is MS because it happens with other conditions too, but it’s the way it’s often described. (It’s caused by the muscles between the ribs going into spasm.)

So we have five separate incidents: optic neuritis, incoherent speech, raised heartrate with no explanation, MS hug and sensory disruption on the face. You may not feel like any of it was terribly serious, but it is definitely something that should be investigated.

Btw, the MRI that they did when you had optic neuritis may not have covered the whole brain and things have happened since then so there may be something new to find.

Hopefully it’s nothing serious, but it’s definitely better to be safe than sorry. So, as I already said: to Doc. You need to ask for a referral to neurology.

Karen x

#3

Hi Karen Thanks for taking the time to reply. I will book the appt and keep my mate happy! Reading through the posts this afternoon, my symptoms are so utterly insignificant to what the rest of you have/are going through and i do feel a bit silly, but at least hopefully i will get some answers. Ps - is someone taking the micky - a hug!? What a singularly inappropriate term. I certainly don’t feel fluffy and comforted when i get one! Lol. Thanks again. Angela. X

#4

Hi Angela I can’t be much help I’m afraid, other than to say your symptoms are absolutely not insignificant. Never think that how you feel or what you experience is any less worth talking/thinking about. It’s all relative! Definitely see your GP and look after number one. :smiley:

#5

Thanks Traitsy I guess i mean that on their own, each symptom is quite minor. I kind of feel like it is almost making symptoms fit the illness. If that makes any sense. After all, give anyone a medical dictionary and half am hour and you can diagnose yourself with at least 12 serious illnesses of which two will be terminal. Lol. Angela. X

#6

I know what you mean, but lots of different symptoms over a long period of time still takes its toll. I spent 8 years not even considering MS but in between my MRI results and formal neuro diagnosis (approx 10 weeks) I had decided that everything I’d ever experienced was MS related! You’re right, Google and a runaway mind can be a nightmare, but you’ve definitely got grounds to nag your GP for a referral, and never be worried about asking questions. :smiley:

#7

Thanks. Its just been one thing after another and i am tired and fed up with it all now. I guess i will get the referral and get to learn another whole new dept of the Wrexham Maelor. :wink: you guys have been great. I really appreciate your input and i will let you know how i get on. X

#8

Hello again.

Have appt booked with doc so thanks for all of your advice.

Mooching through previous posts, I came across something interesting… I read that some of you don’t like heat!

Whenever I have a hot bath, my right eye goes fuzzy and the wall of the bathroom changes colour in that eye. It goes back to normal a short while after getting out. Also, one night when I was having breathing difficulties due to tight chest and feeling of being squeeeeezed, I had a bath thinking it was my asthma playing up and the steam would help to ease my chest. Nope - it got a whole heap worse to the point where I couldn’t even sit myself back up in the bath and I really really struggled to catch my breath. At that point hubby got me out and called the paramedics!! Interestingly, no wheeze present upon examination and they said it didn’t look like asthma. Doc in hospital still put me on nebuliser though…

So, in conclusion to my ramblings… not trying to diagnose myself, I just thought it was interesting and maybe of note to tell doc.

Angela

x

#9

Hi,

When I had optic neuritis I had a brain scan(mainly of the optic nerves) which showed no inflammation and no demyelination.

The neuro referred me for a whole brain and spinal MRI which showed 2 lesions high up in my spine (C2) and a tiny one in my brain (which the person who read the MRI initially hadn’t seen it was so small).

I hope it doesn’t turn out to be MS but at the same time you’re doing the right thing getting checked out.

If my neuro had left it at the first MRI I wouldn’t yet be diagnosed.

#10

That’s interesting Meme. I guess its results like that that make us look like it is all in our heads! Sat basking in the sunlight through the windows earlier, i started to be very aware of the colour changes in my right eye as if all the reds had been washed away and my vision got a bit blurry. I would hope that that kind of symptom would not be ignored and would warrant investigation. Despite mentioning this to the eye docs last year, they just kept on repeating that there was nothing wrong as the scan proved. Got to keep plugging i guess! Angela. X

#11

Definitely. I also had a lower back MRI the previous year for the numbness, tingling and heavyness in my leg…it showed a slight bulge on a disc but they kept saying it shouldn’t be causing me problems and fobbed me off. They were right. The bulge wasn’t causing me problems…the MS was! But I didn’t know it at the time.

So I had a lower spine MRI, a partial brain MRI and nothing showed. It was only the neuro and their knowledge and foresight to send me for another, more thorough MRI that found anything.

PS - nothing on the optic nerve brain scan is a good thing. It means no damage to the optic nerve by the optic neuritis. I know it also means no answers for you but it is positive also. You should make a complete recovery from the ON. I had a round of steroids and got my sight back completely.

#12

That is reassuring to know. Although my eye has never felt quite right since the suspected ON started 18 months ago, the only time I get any problems with it is in the bath.

Thanks again Meme.

Angelaxxx