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Late Onset and Late Diagnosis


PearlDoves
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Hello Everyone,

 

I have check out some other Tourette’s forums and was kindly given a link to this one as well.

 

I'm not your usual I suppose. At around 19 I started ticing on a rare basis and progressed movement tics that would keep me at home from social events. At some point vocal tics started manifesting as well, but I can't remember exactly when. I had gone to a neuro, but because tics didn't manifest in front of him, he was trying to rule out epilepsy I think. A few years later, I went to another neuro and he put me on neurontin and didn't disclose to me anything of what might be causing this from what I can remember, now around 10 years later from my orginal onset, I became really frustrated with my ticing, to the point that I referred myself to a new neuro doc, and based on my history both medically and genetically, we've pretty much both have come to the same conclusion that I have Tourette's. there are some things that could have led of to this from childhood, such as supposedly having ADD as a child that might seal the whole "comorbity" issue. I've had a clear MRI and in the past when I saw my first neuro, I believe I had a clear EKG, so while I'm more rare being with older onset, I know that it does happen. My father has a tic and my grandma does as well, though not nearly as bad as mine are, they can easily get thru life with theirs it seems, while mine can make things difficult and distracting at times.

 

Right now my neuro is having me do monthly B12 shots, and I've heard that this might be good or bad. I'm going to be seeing an allergist this coming week to try and rule out other agitators and am interesting in magnesium supplements as well. For now my Neuro also allowed me to try an antihypertensive med - very very low dose to see if that helps/ He said "no need to rush" as far as medications go and then also encouraged me to seek the alternatives. I told him about the Ferritin and Magnesium topics.

 

As far as the magnesium goes, how do you all supplement with this? Just a mag vitamin supplement or do you all try something else?

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Hi PearlDoves :P

Nice to see you here

 

we get a bit quieter over the weekends, but I am sure you will get a whoe lot more replies coming in

 

re the magnesium supp: many people find that taking a good combo of calcium:magnesium:zinc is just right(there needs to be double the amount of calcium to magnesium present...adult dose is usually 1000:500:25 or50)

There is also strong evidence to show that for many people taking magensium as a chelated compund with taurine is very beneficial for reducing tics..this is known as magnesium taurate and is available by a company called Cardiovascular research (sold online or also at The Vitamin Shoppe stores and website) and also made by Bonnie Grimaldi as part of her Bontech line of supplements for TS ( http://www.BonnieGr.com )

My son takes his calcium, magnesium, zinc and taurine as separate supps as that seems to work best for him, and he (along with other people with TS) is helped tremendously by taking Epsom Salts tubs...2 cups epsom salts=magnesium sulfate) in a tub of warm water and soak for 20-30 mins. Very relaxing and really helps calm tics and promote good sleep

 

Many people have been reporting very good results with a product called Natural Calm, which is magnesium citrate powder. It is available at The Vitamin Shoppe and some other health stores, but also online for much lower price at http://www.iherb.com where 16oz costs almost the same as 8 oz does in the health stores.

My husband, who also has TS, really likes Natural Calm, and takes his calcium and zinc separately. He doesnt use taurine as some people are sensitive to it and he is one...as is Carolyn, one of our members here)

 

Speaking of Carolyn, she has been doing B12 shots for some time and so she would be the best one to advise you on that

 

I would so agree with your neuro re meds....honestly, it is my experience with my own family and from hearing from so may others, that they often bring side effects that area whole lot worse than the tics! They work for some people, but it is something I would approach with great caution and awareness of what each may bring in side effects.

 

Our admin here, Sheila Rogers, has written a really good book on natural treatments for TS

I think I mentioned it to you on NeuroTalk but here is the link again

http://www.latitudes.org/book.html

 

and she also has a real good article on Tic Triggers on the TS section of this website

http://www.latitudes.org/articles/finding_triggers.htm

 

I think I gave you the link to my thread on NeuroTalk on the various things that we have found helpful but in case not, here is a thread I have here on the same subject, which I have just bumped up for you and some of the other new members who have contacted me

here is the link to that

http://www.latitudes.org/forums/index.php?showtopic=687

 

hope that gives you a bit more to work on

Cheri

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Hi Pearldoves,

I'd also like to ask you if you took ADD medication as a youngster since you said you had ADD as a child.

Sometimes those meds (along with some antidepressants) could cause tics to come out in vulnerable people. I believe it is called diskinesia? You could research that. Because it is interesting that you were much older at onset.

 

You say you saw a nuero--have you considered a naturopath? This kind of doctor may have some good advice for you and your situation. Most are not covered by insurances, but if you could afford a consultation, it could provide some good direction. If not, try to follow the many suggestions in the past threads on this board. You will learn alot.

 

Good Luck.

 

Faith

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PearlDoves,

 

I also agree with your neuro about medications. From my experience, I believe it's much better to start with natural approaches first. I've had too many bad experiences with medication. They either didn't help the tics at all or if they did help the tics, the side effects were unbearable.

 

I posted on NeuroTalk about the B12, but I'll also post about it on here. I've been on Methyl-B12 shots for 1 1/2 years now. I have seen no tic increase with them. I think if you were to see a tic increase with them, you would know after a shot or two. I have not seen a tic decrease from taking the Methyl-B12 shots. That is not my primary reason for taking them either. I'm taking them to help with methylation issues and heavy metal detox. The shots do increase my appetite though.

 

I do methyl b-12 shots every 3 days. I give them to myself. Obviously my shots must be different than yours since you do monthly shots. I use Dr. Neubrander's protocol and you can find more info about methyl b-12 shots on his website: http://www.drneubrander.com/page2.html

 

He is a doctor that works mostly with children that have Autism & his big treatment for them is methyl b-12 shots. I do not have Autism, but find treatments to be similar.

 

Carolyn

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Hi Faith

 

Well the thing is my father has tics and my grandmother does as well, so I know that there is some evidence for the genetic factor going on for me.

I did take medications for ADD, however I find this aspect highly unlikely since I believe by the time my tics started to manifest I was basically not taking or rarely taking those meds. I started taking meds probably in junior high, and in both cases the meds were not very high doses. Probably by my second semester or second year in college I was not taking those meds anymore, and it was while in college that my tics started to get really bad, especially around 2 or 3 years of being off those meds completely. It is possible that I use to do a complex motor tic as a child, but as I mentioned earlier, it might be hard to determine what that actually was. I did read up a bit on dyskinesia, there are so many variations, some of which can have similar properties with TS, but its hard to determine. I think my fathers tics did start before 18 which is more normal for TS, maybe I'm just a weirdo in this case, I dunno. Its just all very frustrating though. I wish I could have definite answers. I've been tempted to contact the TSA about my situation.

 

Thanks for the suggestions, I appreciate it!

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Hi Carolyn,

Hope you don't mind my cutting in on this topic, but this is one of the questions I was going to ask of you too.

 

My son is also on methyl B12 shots for almost a month now. I understood that it was part of your regimen too, and was going to ask why you take that. He gets it also for methylation problems, apparently he does not methylate the B12 so he gets it in the methyl form. This was found on the bloodwork done by our DAN doctor. I guess they test for something called MTHFR , which is a gene mutation as I understand. This means the B12 gets stuck and does not convert to the different things in the body because having this mutation means you lack an enzyme that contributes to this. Is this what you were found to have? If so, that's interesting to me. Finding someone else who has tics and that gene mutation. This is something they usually test for on the autistic kids because the research showed that a certain percentage of the autistic kids have this, although it is also found in a percentage of neurotypical community as well. (don't have the percentage handy right now).

 

I'm curious to know why and how you were found to have this too. We do shots every other day (also gets a folinic acid pill) First we chose a intra-nasal form (spray into the nose), but I just wasn't feeling like it was doing anything and did some research and just my gut feeling was telling me to try it in the shots form. So we switched, and I think it must be more available to him as his urine is usually tinted pink soon after the shot. I didn't notice this with the nasal spray.

 

So I guess you answered about what it did for you tic-wise, no more or no less? I would love to see something positive from it. I like the increase in appetite thing, my guy could use it!

 

Look forward to your response and hope this helps Pearldoves as well. Thanks.

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Hi PearlDoves & Faith,

 

We guessed at the methylation issues. If a person has trouble with methylation it shuts off the detox pathways. Methyl-B12 shots are supposed to also increase your glutathione levels. Gluathione is essential to detoxing heavy metals. You can find more info about methylation from here: http://www.enzymestuff.com/methylation.htm

 

My doctor started me on methyl-b12 shots without testing. I had done quite a bit of research ahead of time and brought this up to my doctor. I knew my doctor was doing methyl-b12 shots with other patients. My doctor thought it would be a good idea to do methyl-b12 shots. I haven't had MTHFR testing done although I've heard about it, but it is very expensive.

 

I also take folinic acid. When I first started the folinic acid, it made me so hyper. I ran on 2 hours of sleep for several days. The experience was really scary. I ended up calling and talking to my doctor about this. I had to go off the folinic acid for a week. I then split the capsule in fourths increasing to a full capsule slowly and was fine.

 

From my understanding, you shouldn't see any pink in your son's urine. If you are seeing pink in his urine, I think that you're injecting to deeply and need to go more shallow(if your injecting in the butt subcutaneously that is).

 

Yes, what it did for me tic wise, was no more or no less.

 

We found out that I had heavy metal issues through a hair test and applying the counting rules from Andy Cutler. You can do a search on him and find out more about his protocol & what the counting rules are. I feel the need to caution those looking into heavy metal detoxing through chelation therapy because I really feel you need to research before getting started. Decide what direction your going to head off with and continue through with the chelation until the end. At times my chelation has been a very very rough route, but I'm glad I've chosen this path. I certainly didn't expect that I'd feel so sick for so long while chelating for the first year. I think chelation should be the last step taken once you have done all other natural things.

 

Carolyn

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Thanks Carolyn,

very interesting. You give me something to think about. But the doctor did mention that I might see that (the pink urine). I should ask about that to him. He is supposed to be very good, and I believe one of the pioneers of this DAN type of testing and treatment, but I do wish he would be more explanatory to me about all this. As I said, we are essentially allergy patient, but the symptom we are treating is the tics (the vocal sounds were the first, but since have escalated to blinking and head nod, with blinking being over for the most part, but the nod is the most prevalent). With all the natural treatments, supplements, diet, allergy precautions and the like, I am so frustrated why this is still going on, I would think I could at least keep it to a minimum. He has a sore throat since yesterday, and I feel the head nod was much more yesterday, even my mother commented on it. I have to watch that (the sore throat).

 

By the way, we give the shots in the arm. He basically said we could do it anywhere. But I did do all the research of Dr. Neubrander and his protocol. O gosh, I may have to look more into it and fine tune it. Thanks for the tips. I wondered about the methylation issue having to do with the detox pathways, (mind you the doctor never discussed this with me, the main issue about the B12 was to basically reduce his homocysteine levels which is a strong indicator of stroke and hear attacks later on. So do you think by correcting this pathway, his glutathione should start kicking in and maybe help him detox on his own abiilities, and maybe improve the tics? Any knowledge or opinions you have are appreciated.

 

If anyone else has done methyl b12, I'd also like to hear of their experience and knowledge.

 

Thanks all.

Faith

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