Physio found ankle clonus - terrified of MS and crying

[Samgirl31]

I have a history of odd things that doctors haven't been able to explain since I was about 13, am now 32:

Left leg feeling weird - aching, sciatica, tense feeling, just generally uncomfortable.
Restless legs in both legs when lying or sitting for too long
Aching left shoulder, left side of neck and arm. Like a deep ache, odd feeling in left arm.
Stiff feeling in fingers, particulalry left side - usually little and ring fingers.
Migraines with nausea, sometimes vomiting
TMJ on left side of face
Panic attacks

These have been around for coming up to 20 years and I've learned to live with them. I did have see a neurologist when I was at Uni and a CT scan came back clear and he told me I was fine.

I saw another neurologist again at 24 because my cousin was seeing him about her epilepsy and he wanted so study other members of the family. They did an MRI of head and neck and said they were fine. Possible hemiplegic migraines. I asked him if I could have MS and he said no. The reason I asked was because I had googled my symptoms....

I also worry because my grandad's brother (on my Dad's side) had Motor Neurone Disease and his other brother had suspected CJD. They both went downhill rapidly and died before I was born but once I knew about it I became worried it was hereditary.

On my mum's side pretty much everyone has migraines and arthritis.

Anyway, about 10 months ago I started a diet ahead of my sister's wedding. I was eating 1400 calories a day and excercising 5 nights a week.  After about a month or so I started to get dreadful restless legs.  I was pacing my office at work one day waiting for the fizzing achey feeling to wear off. I also noticed my legs never felt felaxed when I was sitting or lying down. They either felt restless or very heavy.  I went to the doctor who told me to eat more and relax.

The feelings didn't go away and then I came down with what felt like the flu. I had a hacking cough, slight temp, exhausted, and the leg symptoms got much worse. I felt weak and tired and my legs felt really really heavy and prickly. I went to the ER because I was scared. They examined me and sai I just had a virus, though they did test for cauda equina syndrome due to the weird feelings in my legs. After about a week I started to feel better, but still achey.

Since then I've worried about it amost everyday.  I noticed my arms started to hurt while driving and I was getting more tingling in my little fingers and hands. It wasn't debilitating, just annoying. Saw a different GP who precribed anti inflammatories and said it was nothing to worry about, probably a trapped nerve.

Then one day my cheek felt weird, like the dentist anaesthetic was wearing off. It lasted about an hour and went away but I went back to the GP. She did a bunch of tests like could I walk on my heels, was I dizzy etc and said I was fine.

This has happened lots of times since. It lasts a little while and then stops. Usually involves my left side of lips, left cheek and jaw. It's not numbe, it just feels a bit like it. I check in the mirror but my face doesn't droop or anything. Sometimes the left side of my neck feels very tight when this happens.

The one day I was shoping with a friend. I crouched down to look at something in the shop then got up and we went downstairs. As I was walking down the stais I fel a shooting pain down both legs and thought they wee going to give out, but they didn't. I felt very scared though and went home shortly after, where I felt fine. I went back to the GP and told her this and cried in her office saying I knew it was something serious and was it MS. She said no, absolutely not, and the fact that I was working, was going to Zumba one or two nights a week ith no probs etc meant it was just anxiety. She prescribed anti depressants and referred me to a CBT counsellor for health anxiety.

I went 3 times and then quit. It was almost more stressful trying to get out of work and he basically was working on getting me to believe it was all in my head and I shouldn't think such drastic thoughts, but I was still getting all those symptoms I listed at the top of this post.

Over christmas I was out for the day with my Mum. We walked up a very long very steep hill and had a drink in the cafe on top. Walking back down my legs started to hurt and then felt like jelly. I could still get around but felt like I'd climbed everest. I told my Mum but she just said, it was a steep hill, they're just tired that's all.  We carried on walking around shops etc and it felt better after an hour or so and some lunch.

Then the past few weeks the aches and pains in my legs have been more constant, my hands feel clumsier brushing my teeth or doing fiddly things, my neck aches on the left side, my legs feel more tired than they should etc.  I still go to Zumba and manage fine which it was is so weird, but I have to force myself to go because I don't feel like I have the strength.

I went back to the doctor on Monday and she said I should relax, take more excercise even if I didn't feel like it, and just chill out. She said if I wanted, I could see a private physio for an assessment of my back, so I did.

The physio asked lots of questions and did lots of tests on my flexibility and reflexes. I expected her to give me some stretches to do but she said she wanted to write to my Dr and have me referred foran MRI of my neck and spinal cord.  I asked why and she said I had clonus in my left ankle. She said most people probably wouldn't worry but it could be a sign there was an issue with my spinal cord and it was better to get checked before she started treating me.

Now I have to wait for the letter and take it to my GP. Obviously I have googled Clonus and it comes up as a sign of MS, MD, ALS, tumours or disc herniations pressing on the spinal cord but that this is usually only in old people.

I'm terrified, I feel like it's a death sentnece, I don't know what I'm going to do and I keep crying and researching MS.  Last night I had a realyl bad migraine with vomiting and my left cheek, jaw and lips have had the numb feeling again. Is that another sign, or is it because I'm tense.

I need some advice, or anyone else's knowledge or experience. At the moment I just want to hide away and cry. Because I don't know what's going on, the dr thinks I'm a nut case, if it's serious then they've ignored me for years etc etc.

[myWorldofWorry]

I am so sorry for what you're going through. I am in a really bad state right now, too, and I am constantly trying to fight back tears and am sick to my stomach with worry over a scary illness I am sure I have. And, like you, I have been Googling lately too, which just does not ever help. I finally stopped - couldn't keep doing that to myself! Google cannot give us answers, just more uncertainty and things to worry about.

First, your doctor should not make you feel like you're just a nut case. She should be helping you get the answers you need, and if she doesn't, then maybe it's time to see someone else. I am not saying that you have anything serious though. But I know you are scared, and having someone just dismiss you won't help. To be honest, I really don't know anything about clonus. But try not to jump to worst case scenario (not that I am really one to talk!) It will likely be something entirely manageable.

You mentioned that you're really afraid of MS, and I know that's a common fear among health worriers. Oddly enough, it's not one that really terrifies me. Of course I am not trying to minimize the disease, but I don't look at it as a death sentence. I work with a woman who has had MS for almost 20 years, and she still works out / runs on a regular basis. I've heard a number of other stories like this, too. Again, not saying you should even be worried about MS, but just wanted to hopefully help take some of the fear out of it.

Trust me, I know it's scary to have chronic symptoms and not understand what's wrong --- I am in the same boat. I hope you get answers and relief from your anxiety soon.

[Echo Hotel]

From reading your post, it sounds like you might have some disk issues or sciatica, MAYBE. But this stuff with the legs happens to me and I'm your age and I know it's from lack of exercise. And the numb left face thing is something I also get...and it's from the TMJ on the left side of my face, which you also say you have.

Everything you wrote sounds like fairly typical weird little aches and pains that we all get. It does NOT sound like MS or anything serious. Even the tenseness and aching. Maybe a little arthritis?

Anyway, reading your story as an outside point of view, it doesn't sound serious. I think this is your anxiety running crazy with you!! I hope you can find a way to relax until your appointment :)

[Squeemy]

It frustrates me when professionals think out loud expecially to people with anxiety. I seriously doubt you have MS. I had a GP test me for that due to similar symptoms to yours. Although my MRI showed 2 small hyperintensities (which freaked me out at first), my nuro said nothing to worry about they are just abnormalities which could be part of a normal aging process or migraine.Turns out my physical symptoms was muscular from years of incorrect posture. Nothing to do with the MRi finding. An osteo corrected mine. Sometimes anxiety can intensify symptoms because we concentrate on them.

Even if you did have MS (which you dont) its not a death sentence. A friend of mine developed MS in her late 20s. Shes now nearly 60 & still gets around with no assistance. The body & mind is amazing. Sometimes the simplest causes can show big symptoms which can indicate so many illnesses as well as non serious issues.

Keep us posted. 

[MrMoleHill]

Sometimes anxiety can intensify symptoms because we concentrate on them.

I second that!

[Samgirl31]

Thanks for your replies guys. I've spent the past week trying not to think about it, then snapping and googling everything, then crying down the phone to my poor sister who's a doc and keeps telling me I have nothing to worry about! Of course all my sypmtoms have suddenly been much worse as well.

I got the physio's letter yesterday which basically says I have pain and some altered sensation following the L5 dermatome, mostly left leg (which is where it feels like sciatica), pelvis tilted to the right but no scoliosis, stiffness in lumbar spine, pain in left shoulder and signs of nerve impingment in left shoulder/arm, pain on turning neck to left and range of motion in neck altered on turning to left.

She says she found clonus bilaterally but all other signs were negative (Hoffmans, Babinski and Romberg?). She recommends GP does further investigation for to rule out sllight suspicion of upper motor neuron damage and cervical myelopathy(?) before physio proceeds with any treatment.

I read this all to my sister who said she thinks the shoulder left arm problem is separate to the aching tingling legs and the left leg sciatica and that it's probably all related to bad posture sitting at desk all day and I may have injured a lumbar disc when I was doing all that excercise losing weight for her wedding, which is when all this started.

I've got an appointment to see a different GP at my local practice this evening and I'm half feeling calm and half feeling worried.  If it's a disc or a spinal/nerve impingement I'm fine with that. It's just the word clonus that has me terrified, but I know all the other signs were fine for neuro stuff so....

[Samgirl31]

So I saw a different Dr to the one who keeps telling me it's anxiety and she was lovely.

I told her I had googled clonus and she said it must have terrified me but not to worry, sometimes people have it and it's norma for theml. Her housemate at med school had it and everyone panicked when they were leanring how to test for it but he was totally fine. She said all my other neuro signs are normal so she thinks it's sciatica and a lumbar spine problem affecting my legs, with possibly a neck/cervical spine problem trapping the ulnar nerve in my arm. She reckons it's from my posture and sitting at a desk all day. I pretty much only move to get lunch.

I'm going for a nerve conduction test on monday to see if the nerve is being pinched in my arm, and where, and she's referring me to the hospital for an MRI or lower back and neck to check the discs.

I feel so much better about this now!

[colls22]

I think you're fine. Ankle clonus is indicative of so many non-scary things. But, we HA people, well, we know what we do.

FYI, I'm a bit of a veteran with the ol' EMG/NCV, so if you have any questions about it, feel free to ask! For me, the worst part was that the doctor always had the volume turned way up for the needle portion of the exam, which is basically the sound of static for several minutes straight.

[MrMoleHill]

I get a chronic tendonitis in my [anterior] ankle. It comes and goes. Feels like "foot drop", and yes, when I had ALS fears going full force and effect, I assumed that's what it was. I was doing all the self-checking I could, based on tests that I read from a neurologist's website. Trying to walk around on my toes, at home, at work. Looking in the mirror. Running up stairs. Checking my own reflexes. Pathetic, I know.

It doesn't concern me anymore, though. I really don't know what it is. I'm assuming it's what they call "footballer's ankle".

[Samgirl31]

My GP just phoned to say the nerve conduction tests for my ulnar nerves in arms were all clear and the MRI of my spine (from lumbar right up to neck) showed some slight narrowing at the base of my neck but there was nothing worrying on it and nothing that would cause the symptoms I was describing.

This made me very relieved that it might just be anxiety and muscular from bad posture sitting at a desk all day. I was talking to a friend a few days ago who it turns out has pretty much the same symptoms as me and her GP told her it was posture and she's being seeing an osteopath which has been helping so all that had also made me feel much better.

However in this phone conversation,a fter saying the tests and MRI were fine, the GP then said that because nothing showed up that would explain my symptoms, she was going to give me a referral to the hospital neurology team to rule anything else out. Now I'm freaked out again!

Please help!

[floridaguy65]

However in this phone conversation,a fter saying the tests and MRI were fine, the GP then said that because nothing showed up that would explain my symptoms, she was going to give me a referral to the hospital neurology team to rule anything else out. Now I'm freaked out again!

Rule out what?

From what you say, your testing is fine and you're, overall, healthy. Wonderful:)

IMHO, this sounds like testing given for your 'peace of mind' and / or 'CYA' testing ("cover your as*") given from the Doc's perspective. Both of these reasons for med testing are very prevelant. Trouble is, for HA peeps, they are terrible for our healing path as all they really end up doing is locking us up in our current fear cycle just a bit more. A major key in an HA person's lasting peace is moving away from medical intervention when, overwhelmingly, there is not a sinister root cause for our struggles (and physical manifestations). HA peeps, when going through an amped up period, never get the reassurances they desire from medical testing, anyway. Some medical testing is needed, of course, at times. But, a large majority of the med testing that HA peeps end up getting would have to fall into the category of 'unneeded'. Justification is easy to come by in an anxious mind, with regards to med testing. All we want to do is protect ourselves and protect the well-being of our loved ones, right? What's the harm? There is little (to no) protection afforded to us, in reality, by our hyper-vigilence. But, our hyper vigilence CAN and DOES cause serious lifeflow interruptions....it affects how we life...how we work....how we socialize...how we raise our kids...how we enjoy life...how we think of ourselves. To me, THAT is quite a big price to pay, so to speak. There is the harm...I say kindly:)

What is going on in your anxiety help and self-help?

Often niggling aches and bothersome pains are mechanical in nature. Us not being in good shape, lacking tone....not being flexible in our joints and ligaments and not being pliable in our muscles. Poor posture. Static lifestyles. Diet can play a huge role, as well. I'm not saying this is you...but all these things have to be looked at when we are seeking ways to, simply, feel 'better'.

Peace and Feel Well:)