Just weird!

[moo me]

Hey all, not ms I think?

 

thought I would try here as I know from experience you are all familiar with very strange neurological goings on and don't know who else to ask! Also, well it's driving me absolutely mad!!!

 

I seem to have an ms mimic but not sure what yet?

 

started having spouts of numbness in neck and legs, weird twitches in arms, and sensory issues in areas I would rather not have or discuss!

 

First neuro appoint was interesting and after brisk reflexes and a babinski sign they put me in an mri for 50 mins! But the report came back nothing spectacular, but one or two dots of high signal! Also Bloods came back normal but with slight positive ANA however, I do have ranaulds! Also slight scoliosis, reversal of cervical lordosis and degenerative disk disease in my L spine blah blah blah!

 

So was so was reassured and sent back to my GP!

 

But now? recently I seem to elicit clonus in my ankles by accident! Had what feels like ants crawling down my arms and shooting pain down my legs, tingling in my toes and hypertonic leg muscles??

So it seems my silly weird symptoms are flaring up again without explanation!

 

And I feel I'm going mad and no one understands?

 

Hoping you can relate and help me get to the bottom of this!

 

M

 

 

[moo me]

Just re read my last post this morning and I actually sound awful like I'm moaning! Sorry! Mods, would you delete this thread for me?

 

Thankyou! :)

[Hezza]

Hi M,

Firstly, to the forum and, secondly I will remove the thread if you like but you really don't sound moany at all. Sounds to me like you're just trying to make sense of what's going on and I'm sure that many of us can identify with that.

 

My best advice would be to have a chat with your GP and explain how you're feeling and what has been going on with you. Hopefully they will be able to offer some advice or point you in the right direction. I don't really know about your particular conditions but, in MS, things like stress, other illnesses and even the weather can cause symptoms to flare up temporarily - perhaps there may be a link there for you too?

 

Now, I'm sure that in time some of the others will add their thoughts (the forumis a wee bit quiet at the moment), but if you do want us to remove your thread just reply to let us know and I'll do that for you.

 

Take care

[moo me]

Thanks hezza!

 

Your probably correct, and thank you for you kind words! :)

 

I just felt I should have worded it better and wondered that maybe should I have posted this on a general health forum as opposed to a specific forum like this?

 

Regards,

 

M

[Hezza]

We are an MS forum but our members include people with MS, carers, friends and families of people with MS and also folk "in limboland" who don't know exactly what they have yet as well as people with conditions that have symptoms in common with MS.

 

I think if you felt comfortable enough having looked around the forum to post and ask our advice we are happy to have you.

 

Edited 10 May 2014, 12:21 pm by Hezza

[Stumbler]

Try making a short concise list of all the symptoms that have been troubling you. You can then make a copy of this list and hand it to your GP.

 

Our medical professionals like a clinical history to help point them in the right direction.

 

[moo me]

Thankyou both! Yes, I was looking at some other posts just now and can actually see that!

 

Stumbler-

very good point, I think in my past appointments I have tried to explain everything in a 15 min GP session!

as I did in my two neuro OPD appointments! And with time pressure always struggled! Hence afterwards thought oh I did not say that and forgot that!

 

Really should know better considering I too am in healthcare myself! Typically a terrible patient!

 

Regards,

 

M

Edited 10 May 2014, 1:08 pm by moo me

[Nindancer]

Hi, I'm one of the few people that got a complete shock when I was diagnosed, lots of people are in limbo for a long, long time - so stay and talk, no doubt there will be other people with similar experiences.

 

On the 'reasons why' ask your GP to check your B12, from what I've heard, deficiency can mimic MS symptoms so worth checking.

 

Writing it is down is so useful, I didn't tell my neuro about an issue, as I had no idea it could be related! Had to explain it to my MS nurse 9/10 months after diagnosis

 

Sonia x

Edited 10 May 2014, 5:00 pm by Nindancer

[moo me]

Nindancer,

 

Actually my b12 level was two points over the local range! I think 932?

Can't really remember the exact figure but was high and within the 5% of the population that would be high!

[moo me]

I actually have to be really thankful to you all so far! And am glad my second post was not actioned on by hezza and decided to ask me again!

 

[Stumbler]

Never feel shy or embarrassed to post your fears and concerns.

 

We all understand and can empathise.

 

[Crafty Cow]

Welcome to the forum,

 

I haven't really posted on here for a while. I turned to the forum last year having some weird and unexplainable happenings that were not pleasant and incredibly imposing on everyday family life. Needless to say, despite not having a dx, although ms was banded about in the very early days following negative blood tests, I went on to have clear tests which would suggest ms. Unfortunately, despite negative tests, the symptoms have persisted and made for a very challenging time over the last year or so. Finally I got a potential dx of severe complex migraines, which when the neuro explained it, did make sense for the most part, although there were things that were not explainable, but I put that down to the brain being a complex organ and only a small amount of it actually understood. I have been given treatment and will see my neuro again in another six months. He has been brilliant, he has listened to me, offered suggestions and is very compassionate.

 

I guess what I am trying to say is that there are answers out there if the medics just take time to try and help find them. Also, this place has been invaluable to me as they have understood just how debilitating my symptoms have been in my life regardless of whether it is ms or not.

 

Take heart and stuck around, they are a great bunch.

 

Sam x

[moo me]

I am so humbled by all the replies!

 

So I'm definitely sticking around!

 

Oh and thank god to predictive text as my thumb movements always hit the wrong letters! :)

[moo me]

Anyway with that said!

 

I'm 41 male in uk and work in peri operative care for the NHS which makes it so much more difficult! So I will document And start to try to be more open!

 

This seems to be the second round if symptoms for me since last year!

 

Around a month ago I woke up with rubber arms, (not unusual) but this time I was getting the crawling feeling lasting for weeks! Like a trickle down my arm!

 

So last monday I had what I called hypertonic legs (spasticity), I have been seemily walking very weird, on the balls of my feet,

 

Going back even further! I had gait probs in my childhood, mum dislocated my hips during my birth as there was some sort of rush to deliver me! So did wonder about spastic displasi Yikes! But I really doubt it is that!

 

So! well! with that all said! In the past this is what I attributed to RLS, but after been up all that night! Had to phone in sick! However it's been still here since then so it obviously can't be RLS?

 

As I mentioned the fact of hypotonia and accidental clonus, well I was actually trying to stretch my muscles to relax the spasm, obviously i accidentally flexed my ankle too much and suddenly my foot started beating back and forth! Hence my observation of clonus!

 

And if it was not due to spell check, due to ataxia, this message would have been gibberish! So thank you I phone! I had to edit this so many times? Lol

 

Miles x

Edited 10 May 2014, 9:25 pm by moo me

[moo me]

However! Spell check has not helped really looking back!

[Crafty Cow]

Totally agree with spell check on the iPad, I would be lost without it at times, as hitting the wrong key is definitely the norm here for me too lol.

 

I used to be a operating theatre sister before a knackered back and surgery forced me to give up a job I loved oh hum!

 

Hang on in there, the answers will come regarding your symptoms. Maybe not as fast as we would like, but they will.

 

Good luck!

 

Sam

[Nindancer]

Miles,

 

How funny, I'm a few points over on the top end of vit D3. Luckily, a few months after diagnosis I started taking 2 x 1,000 unit tablets a day (well. more or less) so cut back after a quick chat with my MS nurse. So it just goes to show, I don't think I even took it for as long as 6 months so clearly my MS wasn't directly linked to D3 deficiency!

 

Ah, spell check. Terrible on my phone as make frequent mistakes.... new lap top has kind of soft touch keys, so typos galore. Knackered old lap-top is next to bed so gets used when I'm sleepy...... I CAN spell, honest!!

 

Glad you decided to stay

Sonia x

[Great Dane]

to the forum.

 

Don't worry about having a moan - most of us do from time to time.

 

The only symptom you mention I can identity with is the sensation of ants crawling on your skin. For the last few days I have had a very weird sensation of something crawling on my face near my right ear - it has been driving me mad as I cannot help trying to brush it away even though I know nothing is there. In the past I have had problems with numbness, but at the moment I am doing ok.

 

See you around.

 

Great Dane

[The Dragonfly]

Hi Moo Me,

 

Welcome to the forum.

 

Yup, stick around, you've had some great advice already. I didn't think to even come on to MS forums before my dx, so hadn't a clue what all my funny symptoms were, I was in limbo for 5 years +. I can relate to the funny crawling sensations and spasticity, still don't understand about that, but I think I have it but never thought to mention it before. Have them at the mo, all driving me a bit crazy.

 

Writing a list and reading it out to the doctors is always helpful. I find GPs take you more seriously after lots of documentation and dates of how long symptoms were present.

 

Hope you find some answers soon.

 

Jennifer x

 

 

[moo me]

Thanks guys,

 

Crafty, yes I'm at the same level, and the legacy also, L5/S1 broad disk bulge and annular tear! Must be those damn orthopaedic sets!

 

Nindancer, yes also my sodium and urea serum were a couple of points low! And the ana was weak positive hep2 but attribute that to ranaulds!

 

Great Dane and dragonfly, yep it felt like a line on army ants marching down my left arm, got tingling in my left hand now for around two months!

 

As for the spasticity, that's what really boils me pee! I have to constantly flex my knees otherwise I feel really tight!

 

just interested, can any of you manage to self test ankle clonus?

 

Or am I giving myself false positives?

 

M

Edited 12 May 2014, 8:57 pm by moo me

[The Dragonfly]

Hi, never heard about the ankle clonus, sorry. I did look it up but for me it's still confusing.

 

Jen xx

[moo me]

Sorry Jen! Didn't mean to confuse! Just a reflex I just wanted to clarify but I think I have done just that today!

 

So don't worry!

 

 

M

[Nindancer]

I don't know about clonus ether.

 

I occasionally use a foam roller on my quads. It feels good and helps unwind them a bit.

 

Sonia x

[moo me]

Sorry! I'm obviously talking healthcare jargon! Lol!

 

Please remind me in future when I do this! :)

 

M