Hi everyone,
I’ve just joined MS Society. I don’t know if I have MS yet but I am suspecting it…
I would appreciate if you could express your opinion on the below:
I am actually seeing a Neurologist in 3 weeks…
Short introduction:
My husband and I relocated to Australia from the UK in April 2012 with a view of staying there for a while…
Well, let’s say it didn’t wok out due to various reasons…but mainly due to my health issues!
I haven’t been feeling well prior to the move, in fact since 2010 or so… but nobody in the UK could explain to me what is happening…
Anyway, in Nov 2013 (Australia) I was diagnosed with Temporal Lobe Epilepsy - note that I have never had a seizure, only auras. Neurologist based her diagnosis on 1 unclear EEG scan of my brain and mainly my symptoms. She put me straight away on Tegretol and Ativan.
Scan showed:
After that my Neuro has decided to do the MRI , results below:
Few months into the diagnosis I started to feel worse and worse. I actually had my first simple focal seizure (never had that before). Well that what’s I though it was anyway.
So I have been on epilepsy drugs from Nov 2013 until Nov 2014. In the meantime I’ve ended up at A&E at least 25 times! I kept having seizure like episodes but they lasted between 30- 6 hours!
In Sep 2014 I moved to Melbourne and found another Neurologist to get a second opinion… After an initial consultation he sent me to the hospital as he told me that I DO NOT HAVE EPILEPSY and I have to stop taking all my drugs asap!
So I’ve spent 5 days in private hospital having EEG done and being monitored for the whole duration of my stay.
Some abnormalities have been found but nithing to do with epilepsy. I stoped those drugs cold turkey! I go all clear from him and a few letters confirming that I do not suffer from epilepsy.
All my problems started straight after I left the hospital. At the beginning I was going through drug withdrawal symptoms but then it got worse… My GP put me on Valium, then I tried Xanax. It was a short term relief from ridiculous symptoms…
In Dec I had my first weird episode… I was laying in bed and suddenly started to feel very dizzy. Everything was spinning and I felt this spasm in my chest and my back. Like an elephant sat on my chest and abdomen. During that episode my legs were jerking and spasming very weirdly. I couldn’t breath! It lasted for at least 2 hours! My husband called an ambulance. They arrived and put it all to an anxiety attack. I was really upset because I’ve had one or 2 anxiety attacks before but that was nothing like that!
Since then I’ve had 5-6 of the same episodes. Some of them lasted over a week… Can they be MS hugs? Symptoms I’ve had since the first one :
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Constant muscle spams - neck, back, shoulders
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When the episode is happening it feels like someone is sitting on my chest, like my lungs are seizing - very tight. Even tho I breath normally I can’t catch my breath hence the shortness of breath; rapid heart rate (probably due to not knowing what is happening; legs starts to jerk and than can last for around 30 mins to 1 hr (like a febrile seizure, spasming ect) general feeling of fear; extreme pain in my trunk, ribs and chest; sometimes I feel dizzy with that too; feel very cold too - my hands and feet get extremely cold
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Leg pain, pressure like , restless leg syndrome especially in the evening
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Weird muscle twitches - legs, eye, arms, all over body
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Electric shocks all over body, pins and needles, constant feeling of my arms or legs falling asleep
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Sometimes takes me 15 mins in the morning to get out of bed, everything hurts
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Bowel issues after the attack for around a week or so - diarrahea and pain, loads of gas
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Blurry vision, pain behind my eyes
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Recent balance issues and sudden onsets of dizziness
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Facial - jaw pain - random
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Hoarse voice - random onsets
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Pressure in my head with double vision and blurry eyes
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Brain jolting like feeling, falling…
Can I be having MS hugs? They are not all the same… Some of them are so painful that I don’t know what to do. I am currently on beta blosckers to stabilize my pulse and also on Lorazepam 1mg a day.
I am not expecting a medical advice on the forum but it would be great if you could just have a quick look and let me know if you are familiar with my symptoms?
Many thanks,
Monica