I had an appt with a neuro in PA where I am staying this morning. I'm glad I did. He surprised me with several statements, starting with 'you aren't the typical PD patient.'

After seeing where I am in the PD journey, he did not recommend any med additions. He agreed that the drug companies are just putting out the same things reformulated and that basically my only other option was surgical. I appreciated it when he didn't push it; understanding that DBS is very scary.

The biggest surprise, and it shouldn't have been, was my weight loss and muscle atrophy. It's so easy to blame PD and my doctors in Florida did not suggest anything new. But this doctor wonders if I have Pernicious Anemia. This can be treated with B-12 shots. So I'm wondering if I have a shot at having more energy again. And an appetite. Fingers crossed.

He also said coffee and a cigarette would probably make me feel better once in awhile. Caffeine was the first treatment for Pd before l-dopa, he thought.

NO attitude; there are great doctors out there. I'm not recommending that anyone smoke. I just liked his honesty. A couple cigarettes and cups of coffee a day just might be less harmful than the fistful of chemicals we take daily.

paula

that's very good news, Paula! i hope you follow up on the anemia; we forget our bodies are still vulnerable to other maladies- I'm glad that neuro had a wider vision than his own specialty.

word, Paula, he sounds great. I've tried to smoke - I really have - and I'm sure it prolly helps a lot.

That's good news Paula. Please follow up on the B-12 thing. My neuro (no. 2 also tested me for this, and also found my levels to be quite low. I am now on supplements, but up until recently, I was going for a shot once a month. I've since gained some weight back, and every one thinks I'm looking heathier.

This makes me wonder if this is a common problem with us PWPs.

John

I have fantasies about becoming a smoker; a few years back after my dx, when they still allowed smoking in bars in Seattle, I'd light up and tell my friends it was therapy!

Creatine combined with a little exercise can really help rebuild muscle mass. I can notice the effect in about four days.

Second, you might consider getting tested for H. pylori, but - under no circumstances should you try to eradicate it with antibiotics. Search this forum for "pylori" for the details but the short version is that you could end up in a wheelchair permanently from the poisons released by the dying bacteria.

I appreciate the comments and input. It's always a shock to even suspect another condition, and when I looked it up, it said it is fatal if not treated.

John, weight loss is listed as a symptom for advanced pd....so it does make you wonder how many actually have anemia or something else causing the neuropathy and weight loss. I'm encouraged by your recovery.

Rick, thanks, for the - as usual - useful information. H. pylori was on a news bleep just today I think, or yesterday, saying that unless you had an ulcer, which can lead to stomach cancer, our bodies need that bacteria for the immune system.

On the other hand, when I looked up pernicious anemia online, h pylori was in the mix of causes. He also mentioned something about the stomach ceasing to produce acid - wish I could remember that specifically. I asked if you could have that and acid reflux at the same time and he said yes. I have bad acid reflux - could the prilosec be contributing? Who knows...

What dosage of creatine? paula

Here again because I'm getting a little excited now and shouldn't until I get tested. When I filled out the psycho-social section of my patient history, I had to check them all because it included depression, anxiety, family issues, insomnia, and one other that I can't remember. They were all true.

THe doctor came out of his office and quickly added another blood test - for cortisol.

Here's what i just looked up about it. i'm excited because in the 80s, my hormones basically shut down after having my two children - including the thyroid. It was a very stressful time, lost my mother, many things.

http://stress.about.com/od/stresshealth/a/cortisol.htm

Sorry to put my life story up, but as Rick said, these things can be used to put 2 and 2 together for all of us.

paula

Paula,

The acid needed for VB-12 is Methylmalonic Acid (MMA). This is found in the stomach and small intestine, and is responsible for taking the B-12 out of food and putting into the blood stream. B12 is found in red meat, eggs, and some veggies, but mostly meat and fish. (If you notice, it's all the things that heart doctors tell us are bad - i.e. red meat and eggs!)

As we get older, we produce less of this acid due to the cells dying due to age, and other causes such as stomach reduction surgery, and yes ant-acid pills such as Tums, Rolaids, and Zantac (Prilosec). This leads to an absorption problem for this very important vitamin.

The test for the methymalonic acid (MMA) will show whether your B-12 is having problems or not. If there are signs of problems, this can be an indication of an absorption problem as my doctor explained to me. If this is the case, then all the supplements in the world won't help. You'll be tied to a shot in the arm for the rest of your life.

John

It fits like a glove. I've been taking antacids for many years and feel it if I don't. If I get tied to a shot in the arm, I just hope it gives me energy. The doctor said it can be treated with shots; he didn't mention supplements. I don't like the idea, but at the same time am encouraged that i might feel better. Most of my close friends know that I have felt like I was dying for quite some time. No energy. I went off my anti-depressant without noticing any change for the worse. So this is potentially a good thing. Thanks so much for the input.

paula