I have no idea what is going on

Hello everyone. Waiting for an MRI at the moment and wondering if anyone can throw any light on what I am feeling at the moment, not looking for a diagnosis or anything.

Just had an appointment with a neurologist after GP suspected a mini stroke after I had sudden loss of vision in my right eye, totally blurred/greyed out but difficult to describe as it took me by surprise, also my left arm when tingly and weird. Mostly my vision cleared quite quickly but took quite a few hours to return to normal. In March my left arm went numb and heavy just as I started to eat my dinner and I felt it was too weak to hold my fork. I could still move it and had no other signs of a stroke but I got carted off to A&E in an ambulance anyway, said it could be anything and got stuck on a trolley for hours until blood test showed I had not had a heart attack. Since last year I have been getting more and more tired then I started getting dizzy and on a few occasions thought I was going to faint. Walking to the bus stop really was an effort. I mentioned it to my GP and he found out my heart rate was quite low, 50bpm so referred me to cardiologist. Blood tests all came back negative, nothing wrong with my thyroid etc, but heart monitor showed I had PAF. So it was assumed my symptoms were all stemming from that. When I say tired I mean getting home sitting down in a chair then finding it is three hours later and I do not even remember shutting my eyes. Then after my numb arm episode I had to ask to see the cardiogist, only got to see a registrar told him all my symptoms which now included getting weak muscles, muscles in my leg twitching as well as my arms and over my ribs, my left knee giving way, catching my foot on the floor as I walked, feeling like I was getting dementia as I had brain fog, forgetting the names of my neighbour and work collegues, names of my favourite flowers, unable to find the correct word, mind going blank in the middle of a sentence, well you get the picture. At work it is getting very embarrassing, thank goodness they are a marvelous bunch, I have been stopped from going upstairs and I am not allowed to carry heavy stuff, tried to carry a small laminator the other day from one room to another and I wished I hadn’t as I felt exhausted afterwards, no idea why I should feel like that. Mind you when I was on a heart monitor for a week and could not take it off I had to wash my hair in the sink and straight away I had no strength in my arms to lift the jug to rinse my hair, absolutely stupid. I get a ringing in ears on and off every day. For weeks now I feel like my hands and feet get something like hot aches but more burning, comes on and then goes again, day and night. This had subsided a bit. When I was at the hospital my left arm and leg was again weak and I was constantly catching my foot on the floor and nearly tripping no matter how I tried not to. The neurologist did that ‘is this sharp’ thing on my skin, well actually it only felt like the blunt end of a pencil. Of course he dismissed the suspicions of my GP that I had had a TIA, said it was a possibility that it could be migrainous but without the headache and that besides the MRI he would recommend I was referred to a sleep clinic. At least he did not mention ANXIETY which seems to be the default diagnosis that GP’s use. I do have a low dose of calcium channel blocker to apparently control my heart rate which also had the effect of minimising dizzy spells as it dilates the blood vessels, at least that is what I am assuming. Last year I did get a run of my throat going into spasm so I could not swallow my sandwich, but I put that down to maybe the lunch room being cooler to the office. Have not had anything happen this year thank goodness. I have had the odd stabbing pain in various places, once it felt like I had literally been stabbed in the chest, no nice but have no idea if any of these things are connected or not.

Sorry for going on and on but can anyone relate to what I am feeling or am I losing my mind, neurologist says not, very nice guy he is the only one who has taken time to listen to how I feel and reassure me. I am thinking that I have taken the fast track by being referred as a possible TIA patient, otherwise I may have had to wait weeks to see a neurologist. I am not jumping to conclusions that I have MS, I just want to be prepared just in case.

Thank you for listening

Hi Janet, yeh, a lot`s gone on indeed!

Youre being tested for organic reasons and not mental ones, as to whats going on, so that has to be good.

A lot of the stuff could be down to MS, but it is also possible for it to be a different cause.

I was mis diagnosed with PPMS for several years and it turned out to be possibly a genetic problem. My lower half is affected and my arms remain strong and unaffected.

Try to keep an open mind and take all the tests offered and trust the neuro to take his time to reach a diagnosis.

If i does turn out to be MS, take time to let the diagnosis sink in. Dont read too much stuff on t`internet…it can drive you crazy…says me, ha!

luv Pollx

Thank you so much for replying. I am a pretty easy going person and tend to take things in my stride, if I know what is going on I can cope with it. Everything I am feeling is not as bad as nearly passing out when you are on your own and realising the door is locked and no one is going to pick you up. Since then nothing panics me at all. I am not a patient patient unfortunatey and I get annoyed with myself for not being able do stuff as before. Typical my hobbies are hiking and coastal working and Geology. I think I will need the stability of a walking stick just to get me to work on Monday as leg still not behaving and I do not want to end up in the gutter, I had to renegotiate my contract because of how exhausted I have been and now I only work mornings, fortunately I get school holidays off as well. I am keeping an open mind and I am not jumping to any conclusions. The internet is only a tool, it is surprising the number of conditions you can make your symptoms fit if you want to. Good job I am not a hypochondriac, hate taking tablets but I have to put up with them. Hope I do not have to wait long for the MRI, I have had one before so that does not scare me at all.

Thanks for being a virtual hand holder.

Janet