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MS? Cyst? Anxiety?

Please bare with me, this is complicated, I don’t post much, and I’m not too good at sharing, but I’m nearly at the end of my tether.

Although I haven’t seen my nuero since my 2nd mri and lp, I’ve had a couple of letters, confirming lesions, and a positive LP, but I also have a ‘significant’ pineal cyst, which ‘may or may not be symptomatic’, (the LP was also used to check for something to do with the cyst, which was also positive) and therefor he is ‘unwilling to confirm a diagnosis as yet’ and will be writing to a specialist in another hospital ‘for advise as to how to proceed’.

I had a dreadfull reaction to the LP, which triggered a 5 day ‘violent, atypical migraine’, resulting in a day in emergency admissions with sky high blood pressure ( a first, its usually in my boots) double vision, (one above the other, not side by side if you see what I mean!) left side numbness in face, arm and tongue, and was drained of every drop of blood they could extract for every test known to man! It was following this that I got the letter from the neuro about the specialist.

My GP is being cagey, but says that it is his understanding that they won’t confirm an ms diagnosis, and/or prescribe dmd’s because of the possibility of the cyst causing symptoms, and/or being antagonised by dmd’s. And there’s little or nothing they can or will do for the cyst, apart from treat the symptoms. He suggested ringing the neuro’s to try and get some info, but the secretary says they are still waiting to hear from the specialist, who is in another county!

In addition to this, I’ve had 2 x 24hr ecg’s, and an echo for irregular heart beat, and tachicardia, and chest ‘squeezing’. There’s no mechanical heart problem as far as they can tell, the cardiologist suggested it may be to with my neurological probs, and put me on betablockers, (the neuro wanted a copy of the first ecg too) my GP says its probably exacerbated by stress, and tried an anti depressant, to which I suffered a violent alergic reaction, and had to be given massive amounts of valium and additional betablockers to stabalise! I’ve had two massive ‘panic attacks’ at night, which have woken me from my (zopiclone and valium induced)sleep, feeling like I’m being shaken awake, but its internal shaking and squeezing, and pressure on my chest. It takes several days for it all to calm down, then I’m floored by fatigue. On top of that my thermostat is up the creek, I’m boiling or freezing, and my left eye is seeing red as khaki green! And I’ve got terrible jaw/tooth ache from clenching my teeth so tight.

I’m sorry to go on so, I’m feeling so crappy, scared, exhausted. Nobody seems to be sure if its symtoms causing anxiety, anxiety causing symptoms, all symptoms, or all anxiety! Least of all me!

Anybody else here have experience of cysts? Anxiety/panic, and/or any of the above?

Hi Hunny, well with what you’ve been through you’d have to be super-human not to be completely stressed out!

On your symptoms, here’s a couple of things. The red / green confusion you’re getting could be Optic Neuritis (ON). Very common with MS and is often a first symptom for people, especially RRMS. I suggest you go back to your GP or go to your optician to try and get a dx for that. They will shine a light in the eye to look at the nerve and should be able to dx immediatly. This would also help your neuro with trying to dx MS (although having ON doesn’t mean you definitely have MS… but with other symptoms could help to dx).

The sqeezing sensation you are getting could be MS ‘hug’ (aka ‘banding’). Also common with MS it is when the muscles in the rib-cage go into spasm. At best it feels like wearing a tight corset, at worse it is very painful and hard to breath. Can feel like having a heart attack. Look on this site ‘What is MS?’ and ‘symptoms’. Or google MS hug.

I’m sorry I know nothing about the cyst, but the specialist being out of the country doesn’t mean that he’s not due back any day. Is it possible to find out when he is back? Or are they waiting for him to contact them with info?

I think for now you should try and deal with things one step at a time. 1) Get your eyes seen to. That could really help the dx. Have you told neuro about this? Have they already looked at your eyes? If not, you need to see GP or optician. 2) Read about MS Hug and see if you think that’s the problem with squeezing sensation in your chest. 3) Phone the neuro secretary again and ask when they expect to hear from the specialist. IF you have had a dx of ON tell the secretary. Ask her to tell the neuro.

The stress you’re under is enourmous and sure, some of your problems might be caused by anxiety… but certainly not all of them. Hang on in there. I really hope you get some answers very soon.

Pat x

Ditto to Pat - please see an optician/ophthalmologist about your eye and it could be the “MS hug”, which often responds well to muscle relaxants.

I’m confused about the pineal gland. I thought its main function was producing melatonin (which is probably why you need the sleeping pills) in which case I can’t see how a pineal dysfunction could cause MS-like lesions. I could easily be wrong though (my understanding of the endocrine system is only basic).

Have the doctors prescribed something to regulate your melatonin levels? I would have thought that this was really important. Melatonin doesn’t just regulate sleep; it does lots of stuff - so it’s important to have the right amount (and at the right time).

I really hope that things get better very soon for you.

Hang in there!

Karen x

Hi hunny x

Most of your symptom descriptions rang a bell with me!

Double vision - ‘one above the other, not side by side if you see what I mean!)’ Oh yes I see what you mean as I get this - very odd thing!

I get the chest ‘squeezing’ - that gets really bad sometimes - the first time it happened it scared us so much my hubby rushed me to A&E - and there’s no mechanical heart problem as far as they can tell with me either.

I have also experienced feeling like I’m being shaken awake by ‘internal’ shaking and squeezing and pressure on my chest! I have NEVER EVER described these as ‘panic attacks’ though!! I do get odd adrenaline rushes in the early hours of the morning but I don’t associate these with stress.

When this ‘episode’ started with me 8 weeks ago along with other symptoms like fatigue, numbness, muscle spasms, twitching and fasciculations I was also suffering with jaw & tooth ache from clenching my teeth - particularly in my sleep - but then my jaw started suddenly spasming in the day too - almost ripping my back teeth out! My eye was also having a spasm party for the whole 2 months!!

And the one that resonates with me the most at the moment is your comment ‘on top of that my thermostat is up the creek’ - see my post today about this!! - It’s driving me mad!!!

I have some lesions on the frontal lobe and an enlarged pituitary gland. My doctors think there is more than one thing going on ie an edocrine problem as well as demyelation - so I’m seeing an endocrionologist tomorrow and a neurologist on Wednesday

I’ll let you know what is said xxxjenxxx

Thanks so much for the replies.

I have had optic neuritis, confirmed in both eyes, last year, but I’ve had no pain this time, just colour loss, so assumed that wasn’t what this was.

I did wonder about the ‘hug’, but people describe it so differently, and because of the palpitations etc, I’m not sure, and neither is the doc! I have never really believed these episodes are panic attacks, I’m not sweating and gasping for breath, more squeezed and frightened, but you just get bamboozled by the docs, I never see the same GP twice, and they all have their own theory.

As far as the cyst thing goes, I don’t THINK they are suggesting the lesions are because of that, they’ve said demyelanation, but they are waiting for some results on some of the spinal fluid, which has gone off to some distant lab, and the illusive specialist, before anyone commits themself to a diagnosis or treatment. I haven’t been offered melatonin, or any other help apart from sedatives and betablockers, and I honestly feel like they are just trying to keep me drugged, calm and ticking over, because nobody knows what else to do! I keep being told they can’t do anything untill someone has made a diagnosis!

I felt I’d been coping well with it all really, the hubbies heart attack etc, but since the lumbar puncture, its all gone bums up and if I wasn’t anxious before, I’m bloomin well heading that way now!

Hi Hunny x I thought for ages that I was getting regular palpitations with the ‘squeeze’ then after getting fasciculations in various muscles I realised that that is what I’m feeling in my chest & upper abdomen!!!

They are like ‘flutterings’ and as I said - I was convinced they were palpitations!! Just a thought … xxxjenxxx

Thanks Jen, all a bit wierd isn’t it? Your symptoms sound similar to mine. Very best of luck today and tomorrow with your appointmentsxx