Tourettes and ms.

New diagnosis and before diagnosis
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Hello, I’m just after some advice please. I hope this post finds you all well.

I’m 36 and have Tourettes with complex tics, motor and vocal. Sometimes I have to use a wheelchair because of the severity of my tics in certain situations.

Anyway 3 toes and a chunk of my right foot went numb 6 months ago. I have a posession style please exorcise me back tic! Where I literally bend over backwards. I tought this was why my foot went numb. I had a back xray and all was fine.

Bloods discovered a folic acid deficiency, brilliant I’ll be cured!

Been on folic acid for 3 months and I’m not getting better, I’m getting worse. My gp has referred me to the neurologist to have an mri, due to the tics I’d need a ga. I’m still waiting for this.

I’ve got a mass of symptoms that I’m really hoping aren’t ms.

I’m visually impaired and have one good ish eye. I’ve had trouble focusing that eye and I’d naturally presume it’s the eye disease progressing. But it’s almost like a white blur that appears then goes. It’s strange.

The gp tested my legs, the left leg didn’t react the same as the right leg. And almost all day every day my legs feel weak kinda like when you have a general anaesthetic and it runs through your veins. Weakness running through my legs. I’m stumbling when I turn right. I’m mixing my words up, saying it right in my head but speaking something else. Making ridiculously stupid mistakes at work.

But the tiredness, well. I cannot keep my eyes open.for the first time in years I’m sleeping all night and falling asleep in the evenings. Sheer will is keeping me awake at work. Though I’m not getting half as much done at the moment I physically can’t do it. I hate feeling like this.

I thought I had raynauds as my fingers can go white cold with a slight breeze, yet I can submerge my hands in cold water and they’re fine. I cam hold a pen and get numb white patches on just the parts of my finger I’m holding the pen. And recently my hands go bright red and boiling hot the finger tips hurt so so much. Just relaxing, off they go into hell fire!

I’ve started getting headaches and we’ve been through 3 beds in 2 years as I thought that was why I had a bad lower back.

The gp tested my legs my eye, etc been on the folic acid 3 months.

I’m in bed now and have the weakness feeling running through my legs. I’ve also got little tingly patches appearing then going on my cheek and forearm and this weird horrible pain that wakes me up in the tip of one small toe, and some random new pains.

The numbness has receded from the outside of my foot but it still feels like I have a block of numbness inside my foot. Bizarre.

But the most bizarre thing which is why I think it’s something to do with my brain is my tourettes has eased. Tics wax and wane but I’m not ticking much at all. Granted it’s a blessing since they are so bad. But I’m not right.

I needed to talk to someone. And I’m only just admitting to myself that I could have ms. Though I’m really hoping I’m just so deficient in folic acid it’s taking months to feel better.

Any words of wisdom before I see the neuro please.

Many thanks

Vg

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Sorry I can’t see where to edit my post. The extreme tiredness comes with total brain fog. I’m here but I’m not. I’m also incredibly sensitive to sounds too. Does it sound like ms? Does anyone have Tourettes and ms, and notice a difference in your tics? Thanks Vg

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Hi Vg

Sounds as though you are coping with a lot at the moment. Did your GP suggest that your folic acid deficiency should be resolving by now?

It would seem to my non-expert eye that many of your symptoms are shared with those who suffer from MS but there are lots of other conditions which it could also be I’m afraid and without an MRI, no one can tell you definitively.

In the meantime, a referral to a neurologist sounds like the right course of action but I’m afraid this can several weeks to come through (up to 16 weeks in my area). I’m afraid it is a case of waiting it out but I do appreciate being in limbo and getting anxious about what it might be is not a great place to be. (I’m in this situation right now too though paid for a private neuro appointment).

Take care

Jane x

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Hi Jane, thanks for your response.

Yes gp thinks I should be fine by now. He’s really great to be honest.

Yes, it’s a total juggling act managing my health, home and a full time job.

I’ve become a lot less productive in work the last month, it’s really bothering me but my team are helpful.

I seem to wander around in a fog, doing the bare minimum and I’m struggling with that. Today the leg weakness has been horrendous, and this evening gone up to my arm and my eyelid doesn’t appear to be working right.

Going to see how I go, and go see the gp this week I think.

I take a lot of medication, some of which are anti psychotics which in itself have bad side effects, and muscle relaxants. I was coping and feeling ok. But this last 6 months, not at all.

Yes, patience is needed.

Good luck

Vg.

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Hi,mmmm, what a lot going on for you hun.

The best advice I can give you is to wait for that MRI…chase it up with your gp, if it is taking a long time to get an appointment.

With a diagnosis of tourettes already, I think it is hard for any of us to comment in a positive way for you.

luv Pollxx

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Dear Vapegirl

It seems like you have a whole load of problems and it’s very difficult for anyone to really give you any advice apart from what’s already been said, i.e. that you do need to get an MRI done so the referral to the neurologist is pretty much essential.

Also, have you thought of putting a (maybe a tad briefer) thread on the Everyday Living forum? Just to see if there’s anyone on there who has both Tourette’s and MS. Not everyone who uses the EL forum also looks at this one, and it seems like you’re more likely to find someone who has both on there. If you do get someone who can relate to your Tourette’s as well as possible MS, you may get more helpful insights.

Best of luck with it.

Sue

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Hi Vapegirl ,

To assuage your fears and alienation, though it is definitely a rare occurrence, yes: there ARE people with both––I am one of them.

First, to answer one of your most pressing questions, many––if not most––of my violent and obtrusive tics disappeared completely a number of years ago; though I have been in a wheelchair for 15 years, I remain active and independent, and do have limited mobility in my lower body.

My understanding of the science (though only as a layman) is that having Tourette’s is like your brain running on 246 valves, while with MS, your brain’s motor (and also that of your spinal column) runs on less than 16. My IQ and mental aptitude remain quite high––far above normal, in fact––though my short-term memory has been affected (but that might also be a natural ageing effect, as I’m almost 50). Mind you, my vocal tics have almost completely disappeared, even though my voice is unaffected, and despite the fact that my speech is just barely slurred. I do retain a very animated way of speaking, and I often rock both and forth in my chair, much like a person who’s very anxious or high-strung. I also still have a problem with needing to constantly use strong language in mixed company, and do still have facial and eye tics––I take medication to help control these remaining symptoms.

I can’t speak about medications to utilise, nor about their possible interactions, because I am not a doctor, and that would be very irresponsible of me. I CAN tell you that my MS escalated from RRMS to secondary progressive after about 7 years from initial onset (late 20s). I don’t really understand the mechanics of this, and it DOES stump many doctors, but despite living with both conditions for more than 27 years now, and with only limited instances of temporary impairment, I have been virtually unaffected by MS from the waist up (this includes experiencing no significant impairment when exposed to exacerbating factors like heat or cold)

This is not the norm for people with my particular type of MS, so please understand that this does NOT imply anything other than the reality of my particular circumstances, but there have been benefits and drawbacks to having both illnesses, and their interactions have been… “interesting” to watch, to say the least. If nothing else… this might offer you a little hope.

Bottom line: you’re not a freak, and NOT alone. You drew the genetic short straw, which––yes––sucks, BUT… I guarantee that you are possessed of other physical and mental qualities that are VERY positive, but that your peers do NOT possess––despite AND possibly even because of your circumstances.

First step: see your neurologist, and get concrete answers; they won’t be able to tell you about what to specifically expect because the symptoms of both, and those interaction, are vast and unpredictable, but they WILL advise you of the possibilities, and of warning signs of which you should be wary. most of all: know your body: we all can be fooled by our minds playing tricks on u, but you know yourself better than anyone else, and it’s important to do your due diligence, and to keep an eye out for anything out of the ordinary that your peers in either community have never experienced.

Bottom line: if you keep your faith in yourself, and maintain your dignity and humaneness, I guarantee you’ll be okay, and you’ll see this through.

CHEERS, kiddo!

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One of the things that most of us with neurological trouble struggle with is explaining our experience to an uncomprehending world. Living with Tourette’s as you do, I imagine that you are already very experienced in dealing with those sort of challenges! Not much consolation there, I know.

As others have said, it is just a matter of ‘wait and see’. Isn’t that strange, that your tics have gone quiet? Life being life, I imagine you could bet your bottom dollar they would be back in full swing if you decided to give the MRI scan a whirl without a GA… I very much hope that you do not turn out to have another lifelong condition to deal with. I’ll be keeping fingers crossed for you.

Alison

1 Like
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Hi

I have had Tourettes since i was 11 now 58 i am going for a mri scan Saturday as last couple of months having numbness in left side of face and top of same side shoulder and like pins and needles oh and itchy scalp again same side m,y head tics are quite serve and when the muscle in neck gets very bad the pain is blue murder! burning so it might be something to do with this? oh i have PM you over noise issue

Kind Regards steve

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Hi, hope you are feeling ok.I have MS and my son has severe Tourettes with OCD, and Aspbergers.Sometimes we have similar physical symptoms and I wondered if there was a connection between the two, I then found this page.He becomes regularly fatigued and often has tics which make bits of his body become paralysed for a while.Jess on Tourettes Hero has been a great help to us, website, facebook and Twitter I think.