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In The Realm Of Uncertainty...

Hi all,

I’m a new member to this wonderful forum. I’ve been following many threads and posts here and have been mightily impressed by the compassion, empathy and knowledge that has been shared here.

Unfortunately, I’m experiencing some tough times myself now and just thought I’d share my experience so far as I’m currently in a dark time in my life.

Me: 26, Male. Been active my entire life, played football professionally and have always been a healthy weight, eaten good food and never suffered any traumas. I did however get Bells Palsy in 2005 which resolved once, then returned and never fully healed.

Initial Symptoms: In Mid-October (one month ago approximately), I was sitting on my computer doing my work (music) (I use computers almost everyday of the week for 12+ hours a day unfortunately) and I whipped my head to my right hand side to react to a sound I’d heard (a bang of somesort). Immediately, I felt a really awful sense of vertigo. (Never had it in my life). About 2-3 hours later, my jawline on the RIGHT hand side of my face started tingling, followed my by RIGHT hand. I rushed myself to A&E.

1st Hospital Visit: After 8+ hours waiting in A&E, I was told that no scans were needed and I’d likely pinched a peripheral nerve running from my right hand to my neck. I was exhausted and went home feeling some relief. That night however, my RIGHT foot started tingling and felt ‘cold,’ even though warm to the touch. I was devistated and immediately went back to A&E the following day.

2nd Hospital Visit: Nearly 10 hours of waiting later, I had a CT scan (brain) done, all my bloods, nerve reaction tests etc. All were clear, but the doctor referred me to a neurologist with her words simply, ‘‘neuropathy?’’

3rd Hospital Visit: After a weeks wait (incredibly fast turn around), I met a neurologist who had me undergo an MRI (brain) using a 3T machine, X-Ray of my chest, and a bunch of nerve studies. It was a perishingly long day. However at the end of it all, he told me all was clear again. Due to my history of migraines, he said it was more than likely a ‘silent’ migraine I’d suffered and told me it would resolve in a few weeks. On the scan, they saw a bunch of sinusitis/inflamed sinuses and some ‘fluid’ behind my ear. I’ve had bad experiences with wax buildup so promptly had my ears treated.

However, the burning in my hand continued, moving up into my forearm (hurting most at the joint), but never further up my arm. The ‘cold’ sensation of the foot never returned (to this day) but this ‘warmth’ feeling remained, moving into my shin and above my knee. So, right hand/forearm, right foot/knee. The biggest problem I was having was waking up and feeling like my right leg was ‘fatigued,’ and the muscles would tire quickly if I exerted any pressure on it. Same story for the forearm, although my grip has never been weakened, nor has my leg lost strength at any point. Throughout the day I might get slight tingles or a quick pain in either my arm or leg but it disappears and doesn’t bother me. All my symptoms above become WORST at nighttime. Lying down seems to trigger everything, while moving around during the day I forget about them. Once or twice, I’ve literally felt like I had one leg, a feeling that at my thigh and below, my leg is asleep, not connected to me. I then wiggle it and it’s fine again.

As a side symptom, my right ear kept on bothering me. I had micro-suction done to clean both ears but the right ear remained somewhat ‘full.’ I experienced some more vertigo too and the ear still does a bunch of clicking and popping when I swallow, yawn etc. I feel like my right ear isn’t as good hearing wise as it has been, maybe in the lower frequencies mostly but my hearing doesn’t sound off either. My GP told me due to the severe inflammation of my sinuses, it’s more than likely that. I was given a nasal decongestant and Serc tablets for vertigo. Also, out of the blue one day, a very VERY slight white noise type tinnitus just came about which has been around for a week now. It’s barely noticeable unless in silence but yet another twist. Linked to my tingling, burning? I’m yet to find out. It’s not changed in volume at all. I’ve got a pretty bad septum deviation and poor asthma which leads me to ‘snort’ alot so I’m sure my Eustachian Tubes get hit hard, but it worries me that it’s on the same side as the rest, the right hand side.

4th Hospital Visit: While watching a movie with my girlfriend, I noticed my keys on my laptop keyboard were somewhat ‘glarey’ to my eyes. I closed my left eye, no problem, closed my right, DOUBLE VISION. However, it wasn’t double vision like normal double vision. I wasn’t seeing two of everything in that eye, only ‘shadows’ of illuminated text. IE, traffic lights looked like they were duplicated, text on a screen looked like it had a shadow under it, and the closer I moved to the object, the vision aligned. I rushed to A&E again (never in my life had double vision) and after 12 hours waiting (slept in my car waiting for the eye clinic to open at 8am) I was again cleared. The Opthmologist said my sight was perfect, peripherals perfect, colour perfect and told me she thinks it may be linked to all the tingling, burning etc. I also had another CT of my brain done which showed perfectly normal again.

She’s written me another referral letter to go back to a neurologist again and I’m just exhausted.

I’m extremely worried I could be developing MS and hence just wanted to see if anyone had any advice/suggestions for me based on the above.

Aw bless you. I had similar experiences of painful symptoms and a clear MRI. But the neurologist said something very comforting " you definitely do not have MS RIGHT NOW , you might have it in the future but not now" and that sent me on my way telling myself it was just phychosomatic pain . But yeah it has just come back again with a vengeance. Gabapentin has magically removed all of my symptoms while i wait for the neuro. See if your GP will let you have a go on it. If it works it shows its neurological.

I think what you have to hang onto is the fact that you’ve seen a neurologist, have had an MRI and other neurological tests and the doctors have concluded that you don’t have MS. That pretty much means you don’t have MS. People don’t tend to ‘develop’ MS, they either have it or they don’t.

It’s worth starting a health diary so you really have some evidence to back up whatever happens in the future.

And keep on seeing the neurologist for as long as you have neurological symptoms. You may not have MS, but you still want an answer to why you are having these weird symptoms.

Best of luck.

Sue

you spend a lot of time on the computer.

posture can make a lot of difference.

look at different chairs because there are some ergonomic kneeling seats that may help.

i’d need to try before i buy so go to a shop where you can do that.

there are a lot available online but you can’t try them out.

happy shopping!

My night sleeps are getting worse. Spent the last two nights with my elbow at the joint feeling warm and uncomfortable, along with my thigh on the front, down to my shin and foot. Then my left elbow did the same for the first time. My back has been painful today and I’m so nervous it’s unbearable.

hi again try spare pillows for your arms or anywhere that is giving you gip. do try to adjust your posture when you’re at the computer. see if your gp will refer you to a specialist in the types of pain you are suffering. a physiotherapist would probably be able to help.

Gabapentin really worked for me. Ask your GP for it. Also use ibuprofen instead of paracetamol for pain. It works better for inflammation pain. You can use ibuprofen gel. Maybe that would work too. You don’t need a diagnosis to get gabapentin

Hi all, thank you for the replies so far. This is definitely worsening. Woke up today and my lower back was incredibly painful, worst I’ve ever felt in my life. I feel like I’m gonna tip over on one side when I lean at all. Speech, cognitive, vision all perfect. Starting to worry I’ve not got ms but something spinal. My GP told me not to go back to A&E as they’ll just do the same tests. She’s trying to get me a neurologist again but I’m worried I’m doing damage in waiting. This is hell.

Back pain disappeared following day, replaced by occasional little pains in hand, forearm and shin.

Waiting on Neurologist (part 2) appointment. I’m going to push for a spinal MRI.