[skcher98]

Can anyone else relate to this situation? I'm needing to know I'm not insane at this point.

I originally started on this site with vertigo and balance issues, had an mri with bright spots, and was headed to the neuro. Since then I have added a fine tremor mainly in my right hand at rest, but when I hold onto something that is attached such as a rail or something will sometimes travel up my arm. There's other twitches just about everywhere which is FUN let me tell you. Also, I apparently don't swing my arm when I walk and other funny little thing I didn't even notice. Add all my chronic back pain and I'm the perpetual pain for my dr's. lol.

Anywho. He leaned towards PD but wanted to rule out ET so he sent me to get the Datscan done. He also put me on Topomax. By the time I returned, tremors are worsening, vertigos growing and now I'm beginning to know I'm having a hard time articulating myself. Generally I feel like I'm losing it. I know part of this is a side effect though. Neuro actually told me that he was surprised that the scan came back normal. I asked him then you can rule out PD for me then. He says no. GREAT. I asked him at least 5 times in that appointment and he wouldn't. Apparently I'm a general topic of discussion in the local neuro community and all dr's point the same direction.

Next step. He wants me to go to a movement disorder specialist in Augusta GA at the Regents Center which is supposed to be top and have them take a look and see if theres is something he's missing. Of course that's not til August, UGH!!!!

Topomax has been moved all the way to 100. He put me on Valium 5 which did start to work until about a couple of weeks ago where my vertigo has started coming back full force (marked with a full face plant in front of a grand lobby of 10 glass elevators which was NOT at all embarrassing) and has continued. He started me on Sinemet yesterday.

P.S. I'm only 37. I know this all seems nuts; it seems nuts to me. I just need to see if someone else out there has been through this and can relate. My inner brain keeps telling me to suck it up, get the kids to school, get to work, get your crap done, keep your husband happy and STOP YOUR WHINING, but my body is not cooperating and I'm trying REALLY hard not to let this bring me down. Having someone to relate to in some strange way helps keep me positive.

[Muireann]

You're 37, negative datscan for pd ... And the neuro put u on sinemet? That's outrageous. You need to be seen by a reputable movement disorder specialist. Sinemet is a powerful drug, normally kept in reserve for patients with well established pd.

[skcher98]

Originally Posted by Muireann

You're 37, negative datscan for pd ... And the neuro put u on sinemet? That's outrageous. You need to be seen by a reputable movement disorder specialist. Sinemet is a powerful drug, normally kept in reserve for patients with well established pd.

That appointment is coming in late August although I'm on the cancellation list. We will go from there I'm sure.

[Muireann]

Late August isn't good enough. Every minute you are on sinemet you are teaching your brain it ultimately can quit its job of producing its own dopamine because the drug will now do the job for it. This process is called feedback inhibition. If u didn't already have pd, you soon will after a while on this drug. And further, you risk developing the side effect of dyskinesia - excess movement. Bigger movement than tremors.

Much as you yearn for a diagnosis, you don't want to end up creating what it is you think you are discovering. You may simply be under a lot of stress and in my experience that can trigger a lot of physical stuff that vanishes with lifestyle changes, more sleep, exercise and fresh food. Also, get your b12 levels checked.

[Muireann]

Another thing, how does a probable dx of pd warrant a script for anti-convulsants plus tranquilliser ? That's quite a cocktail including the sinemet. Between the poly pharmacy and the symptoms and how awful you must now be feeling, a well justified dx will be hard to come by. I hope you are accompanied by a trustworthy advocate next time you see a doctor because you have gotten a raw deal so far.

[skcher98]

Met with the neuro again yesterday. We removed the Topomax all together; his concern also being first it didn't seem to be doing a dang thing. The sinimet actually stopped the shaking a lot. I actually was in there for an EMG test still in search of another elusive answer. He also is not happy about the August appointment and is trying to pull some strings to get me in sooner. He had me do a few more dx tests that he typically does with a new patient and he's still convinced; the fact that the sinimet is helping is only supporting that with his dx.

We've done the Fuhrman diet. Completely vegetarian for the last 8 months. I lost 30 pounds with it; which is awesome. Stress is always high, of course that has come up; so we've remodeled the lifestyle as such to reduce the risk and try to improve that as much as possible. I exercise 20 minutes on the elliptical 3x a week and now swimming when it doesn't rain. Sleep schedule as well has been strictly regimented as I get up at 4:45; I go to bed by 8:30. I met with a lifestyle coach in an attempt to try and see if we can fix this issue that direction as well. This has not been an overnight process. Somewhere around 3 years before I even saw the nuero. Nothing's vanished

As for the B12. That was where this whole journey started. When I started getting vertigo, I went to my General who did a workup and found out that I was completely bottomed out on my B12. I asked, well do I take vitamins, duh. Never knew anything about how bad that could be ever until recently. At any rate. Took my shots, went back in to get checked and it straightened out enough to get to only have one shot a month. Everything came back full force; levels checked again. Bottomed out again. So, I have to take shots every 2 weeks for B12 just to keep that part straight. The general stays on that one pretty good.

Problem is, even when levels are fine, I still have vertigo etc. That could be inner ear etc; MRI ruled that out. This whole tremor thing is new. Stress of course is in the mix as a cause, but because of some of the involuntary things I apparently do, the falling, the reactions of the muscles and the stiffness they are feeling in certain areas of my body, they want to get this motion disorder area ruled out first I suppose.

My mom passed at 50; She had MS (yes, that's been ruled out). She was depressed of course and she had a host of things wrong with her. When she died, my mom was on 20 different Rx medications. 20. She took each and every one of those daily. I understand why. The need not to hurt to try and be a part of things again and not the anchor. I get it, but I'm NOT going there if I can help it.

As of today, I daily take 2. I take the B12 every 2 weeks. I have a host of pain medications that I almost guarantee you are worth a small fortune on the black market that I keep for days I just simply give in. I CAN'T be my mom. Sinimet scares the HELL out of me. In fact, anything to do with this brain stuff scares me like there's no tomorrow. BUT, if the only way to find this answer is by process of elimination then I guess that's what I have to do.

In the meantime, when I meet someone and they stare at my hand, I reach out I grab their hand for a hand shake and I say to them, "Don't worry, it's the easiest hand shake you'll ever have in the world. I'll do the work for you." And I smile.

I've got no choice at this point but to trust the doctors.

[skcher98]

Originally Posted by Muireann

Another thing, how does a probable dx of pd warrant a script for anti-convulsants plus tranquilliser ? That's quite a cocktail including the sinemet. Between the poly pharmacy and the symptoms and how awful you must now be feeling, a well justified dx will be hard to come by. I hope you are accompanied by a trustworthy advocate next time you see a doctor because you have gotten a raw deal so far.

My husband is my rock and also the one who gets to remember all the important nuances. Honestly, I forget things, important things, the second I walk out and I can't write well enough so I can read it. He's also my researcher. I never even remotely thought of PD until the DR said it and Jason just shook his head yes and he said that's what I was thinking. Jay's the kind of guy that requires 2-3 opinions before he's happy and will make me change Dr's if he's not feeling the right steps are being taken. In fact, yesterday he discussed the Sinimet with the dr for a good 15 minutes as I just kind of watched a ping pong game. Good to have someone on your side sometimes.

[Muireann]

take a look at this:

http://www.youtube.com/watch?v=BvEizypoyO0

my pd started with rock bottom b12. you may need years of shots to get rid of the neuro symptoms

[lindylanka]

Hi, There are echoes of things that have happened to me in your experience, except that I was not informed at all initially. To cut it to a minimum I was started on sinmet, three years later had a normal scan, and two years ago (8 years in turned out to have the B12 thing(with additional neuro involvement).

First of all I would like to say, don't be scared of what is happening to you, the B12 looks as though it is helping some, and sinemet at that low dose should not, unless you are very unlucky, give you too much trouble. On the other hand it should be your choice to decide when to take it, given that it is hard to come off, and for some people impossible. So try and let go of the fear, and think about whether the stuff that you are dealing with is manageable or not without sinemet. Ask about alternatives. And exercise as much as you can, which might be hard given the B12 situation. The vertigo thing is awful, and I believe that it is less about PD than B12. If you are stable on two weekly you will have to allow it time, anything neurological heals slowly. You could benefit from sublinguals inbetween. I agree with Muirann on the additional meds, they do not fit into this too well.

Sinemet controlled me for a long time, it i less effective now. I have a hard time trying to work out this strange chicken and egg situation, and the combination of the two conditions is not easy. The cross-overs are too great.

Do you have other auto-immune things going on? I have 3 or 4, and know what I have is hereditary. Do you have loss of parietal cells. It is also interesting, though sad that your mom had MS. I have a first cousin with this. An a grandparent who had PD.

The video that Muirann shared may shed some light on this.

I wish you luck with this. There are vast grey areas, and you will need to do your research, or your partner will. I did read once about something called poly auto immune syndrome that includes both conditions, but there is little research on it. We exist on a spectrum, and finding the best treatment regime is the true grail.

[Muireann]

thanks Lindy, i'm having trouble typing and you've done the very necessary contextualising here. totally agree with your comments.