Please tell me what do you think..

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 :

  • Constant muscle spams - neck, back, shoulders

  • 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

  • Leg pain, pressure like , restless leg syndrome especially in the evening

  • Weird muscle twitches - legs, eye, arms, all over body

  • Electric shocks all over body, pins and needles, constant feeling of my arms or legs falling asleep

  • Sometimes takes me 15 mins in the morning to get out of bed, everything hurts

  • Bowel issues after the attack for around a week or so - diarrahea and pain, loads of gas

  • Blurry vision, pain behind my eyes

  • Recent balance issues and sudden onsets of dizziness

  • Facial - jaw pain - random

  • Hoarse voice - random onsets

  • Pressure in my head with double vision and blurry eyes

  • 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,


Hello monica :slight_smile: First off I am glad they ssaid you didn’t habe epilepsy as that is ridiculous they ever brought that up! I used to have epilepsy and seizures or stares only last a couple of minutes and the fact you had your episodes for some time, its quite alarming that a professional would even mention that! I am currently going through the diagnosis at the moment so can’t share much help there as im not totally clued up myself. I havent had the ‘hug’ so hopefully someone can give you some advice there. I have the tingling pins and needles, cramps, twitches, pain and heavy legs which has lead to my gp suspecting ms. Sounds like you have had a horrible time. Have you been referred to a neurologist? What has your gp said? Hope you’re ok x

Hello :slight_smile:

Thank you for your comment.

I know… You can only imagine how fed up I am! This has been going for so long…

I am seeing a neurologist on the 25th of Jun. That will be my 3rd opinion. 1st one was TL epilepsy, 2nd NOT epilepsy but didn’t tell me what is happening so I am hoping 3rd time lucky as is getting worse…

GP said that I have to be seen by a neuro and speak to him/her in order to find out what is happening. I am worried that the epilepsy drugs might have somehow damaged my brain hence all the issues as it’s all started after I’ve started taking the meds… I’ve actually reported that neuro in Oz that diagnosed me with TLE to the Australian Medical Board and she is under investigation now…

I am actually scared and very tired of this whole situation… I know this sounds horrible but I much rather have MS so I can manage it than not knowing what is going on for another few years…

I hope you will find out soon!! Keep me posted and good luck :slight_smile:

Monika x

Hi Monica,

Sorry you feel like this maybe I could help you get a diagnosis. I would do this for your appointment with the neuro.

  1. Make a list of all your symptoms when they started and whether each is a new or existing symptom.

  2. Make a list of all your current medications you are taking.

Take this with you and give it to the Neuro it will help him/her with the diagnosis.

Good luck.