I've been doing them a little over a year now and frankly, I'm amazed at how little people know about B12 in general. I didn't now ANYTHING. When they talked to me I simply thought I'd take a vitamin. LOL. Part of that sticks in my brain as a cause of a lot of these symptoms as well. I'm horrible about headed to the dr unless I'm bleeding or broken, and I know for a fact that I've ignored a lot for years. Makes me wonder if it does just need to "heal up". It just seems to be getting worse.

Thank you so much. Hate that you know how it feels, but it helps knowing someone else understands. Exercise is miserable, you are absolutely correct. I usually end up getting to the point my world spins so much I get sick, even just on my simple elliptical. Honestly, my heart just denies that it possibly is pd, but if it is and I can possibly find a medicine to help, then GREAT. If it's something else, even better. Sinimet has not quite stopped the tremors, but it's so much better. Just like the B12, I can tell so quickly if I missed a dose (not a good thing ) I know. Removing the topomax has gone ok, but apparently I'm still having the brown outs.

I don't know of any other auto-immune issues going on. I REALLY wish I had any family left to talk to, as I suspect they could help me put a link to this. My maternal grandmother had issues as well and she passed when my mother was 16 years old but I have no idea what of or what conditions. LIke I said, my mom had a lot of issues, but I was so young when she died I didn't know as much as I should. Same thing with my father. There's just no history that I can go by with ANY certainty to help.

I'm such an on the go energetic type person this is just crappy. I can't trust myself to do a lot of the things I love to do anymore. And this head just never stops spinning. I just want an answer.

Thank you guys for letting me vent and get some of this off my mind. It really does help.

The thing about b12 shots is that if you've been low for years it takes a long period of treatment to reverse symtoms of neurological damage. First the blood levels come up, then the liver stores, but as our knowledgeable moderator, MrsD, has said previously, there's a steep gradient before the b12 makes it into the cerebro spinal fluid, where the real repair work happens. Also, you need to be on the right kind of cobalamin - methylcobalamin, not cyanocobalamin, not hydroxycobalamin, in case you have the mutation that prevents you from methylating.

After six months of fortnightly shots, i've got my sense of smell back, been gone since early twenties and i'm now 52. That's very significant.

I think b12 def and pd are connected at the level that you need b12 to synthesise l-tyrosine in your diet to make dopamine.

If you could stay away from l-dopa for a few years, that's your best chance of recovery.

Again I would agree with Muirann, if you can stay off sinemet then maybe your body would recover, and then you could take a look at what still remains. I am fairly sure that PD predated my B12 issues, and anyway had been taking sinemet for nearly 8 years when they emerged, and what is different about the two conditions is that once they are obvious PD tends to progress fairly slowly, while B12 wreaks havoc, leaving you on the couch, breathless, fatigued, as the world tilts around you. Not to mention the fog, which is very like that described in fibromyalagia.

Interestingly B12 issues mimic a lot of other conditions. The reason that I was interested in the fact that your family member had MS is because it is a demyelinating condition, which advanced stages of B12 deficiency can also cause. i.e. B12 untreated deficiency.

Auto-immune things are common, many people have them. Notably ones associated with B12 are demyelination, psoriasis and other skin conditions, thyroid problems and vitiligo. There are lots of others, some more serious, and others fairly minor. I have four altogether, one of which is negligible, but my B12 is caused by an auto-immune response that has wiped out certain receptors in my gut. Not negligible.

The B12(dot)com site has lots of info, as does the Pernicious Anaemia Society site. The book by Sally Pachalok (sp?) has a lot of the research collected in one place.

You are right about how little people know about it, and how badly we are educated about it. My GP, my neuro, and my PD nurse all knew less than I did, which at the time was virtually nothing. Just recently my medical practice pharmacist researched it, and she knows more than all the rest put together. But still not enough. I am on hydroxy, and it seems to be working, though it does not last.

There is a sort of chain reaction with having shots, you need to be taking folic acid, and then you also need potassium etc., and to be honest I have not yet got my head round all of it, but it will take time to sort out, and for you to have a regular regime that works for you, as I am finding out

That is why, if it is possible it would be better if you could postpone sinemet for a while, with your doctors permission of course, as once on it, it is likely that you will not be able to come off it easily.

With both conditions it is about self-education.

b12 is also depleted by taking levodopa, so it's likely the two conditions egg one another on. Nitrous oxide in dental and childbirth anaesthesia can precipitate a rapid loss of b12 and sudden onset of symptoms.

I second Lindy's recommendation of Sally Pacholok's book: 'Could it be b12? An epidemic of misdiagnosis'. In it she describes a man who got rid of PD after 5 yrs b12 treatment.

Been some updates. I HAD to be taken off the Sinimet; when he moved the dosage up I became rather ill. He pulled me off of everything for another couple of weeks to see how my body would react. Everything but my B12 of course. At any rate, I just went in this week for my appointment and of course by that time the tremors had not only returned with a vengeance, they had started traveling. I've lost my sense of smell for the most part and of course all the other triggers that made him think PD are still there. He sat me down, he held my hand, looked me straight in the face and said you need to come to terms with this. Fact is, the Sinimet helped me and as soon as I was off, everything went back to square one and then some.

So, obviously I asked about the testing and the possibility of it still being something else including my B12 deficiency. I came armed with everything I've gotten from all the input. And he still said, it is my clinical diagnosis that this is what you have. Now, let's get these symptoms under control.

I am still headed to the motion disorder specialist in the end of August; and doc said he wants that to get not only a second opinion and said there's a slim chance that it might be something that he's not aware of. He has talked to the other doc and said he also wants HIS opinions on treatments as far as the DBS. Apparently my symptoms are coming so drastically that he is really worried about having me on high doses of medicine and my body quickly getting used to it and having no effect.

That was Monday. He's trying the neupro patch on me now. Starting me out really low and seeing what happens. What I can tell you is that I can at least manage to get my wedding ring on my finger now; and I just started treatment Monday night. I can even finally put my contacts back in. So here's hoping, but I worry about those side effects. UGH

My hubby took me out for my favorite ice cream that night and bought me some Chinese as I think it might be starting to sink in and it's ok. I want an answer, I NEED that answer. In the end of August, if the doctor confirms what my neurologist has already diagnosed I think I'll finally be convinced in my own mind and move forward.

Thanks for letting me vent a bit. I'm still kind of in a numb state I suppose. Regardless, it could be so much worse and for that I am thankful.

I don't remember how much sinemet you were on, but it sounds like either you did not have time to adjust to the higher dose, or perhaps you did not introduce it slowly enough, or maybe you did not need the higher amount. The key with changing doses is take things slowly, whether it is up or down.

As you seem to be responsive to l-dopa it does sound as though you might have early PD. But I say this cautiously. The patches maybe will be better for you, so how you go, and good luck with them.

In the early stages there is a lot of this stuff, a diagnosis is not easy to make, so try not to be in a rush. I know you would like to get it all sorted out, but it really does take time, even to settle onto a medication regime.

It could still be B12 too, so that complicates things.

My best advice on this is just take each day as it comes, and look for signs of improvement; if they do not come through PD drugs then its not likely that you have PD.

Some people do have a strong reaction to sinemet, which indicates a need for more care in prescribing treatment, but on the other hand I would not personally think that it is time to start talking DBS, when you still are not very sure of your diagnosis. All the treatments for PD are powerful, one way or another, and speaking as someone who has a child your age, given your situation I would want to see them try out various options for meds, with different doses, before even going near invasive brain surgery.

You need space to watch your own responses to medication, to let them settle down, and to see whether anything is needed to deal with whatever symptoms are still bothersome. Oh, and moving a dose down a bit can sometimes help too. It's a learning process.

Skecher,

When you come off any drug, you will get a rebound of symptoms. They take a while to settle down and this often frightens patients into going back on the drug needlessly. If I were u I would participate in 23andMe genetic testing, free to u because of pd dx and see if it shows up mthfr mutation. Also, Go to the thread I just started here on b12 and pd. click on the link. Go to resources and listen to the complex talk by ben lynch on mthfr defect and failure to make dopamine. Extremely informative and much more productive than just treating symptoms. I think u need a specialist in functional medicine rather than a neuro. That goes for us all.

Muireann,

If I recall correctly, you stopped Sinemet or greatly lowered your dose at one time. Can you tell me how long it took for those rebound symptoms to fade away and you got to a baseline?

Thanks!

Laura

I came slowly off Sinemet several weeks ago. I had no problems coming off from it. As my dosage got lower, my tremors became much less, and felt much better.

Now I am at 0.125 mg of Mirapix three times a day, and the tremors are worse than with the Sinemet.

I see my neurologist today.