Muireann, my true sympathy with your mom and your family as you gather to help one another. These diseases and drugs affect entire families.

To answer your questions I never had bradykinesia or a blank stare until after taking sinemet several months. (symptoms u describe also could be associated with epilepsy petit mal seizures, narcolepsy, brain tumor, normal pressure hydrocephalus, Lyme, MS and many many more). The general rule of thumb "used" to be wait until all else is exhausted before the sinemet is introduced. Now I believe that docs that roll it out as a means of first resort are doing their patients a HUGE disservice. Since so many of these diseases respond to OTHER treatment and OTHER drugs why not try them first or some treatment that is less damaging and has less potential ever ever rediagnose.

As I am finding out there are lots of other drugs that treated my small adrenaline fueled tremor such as Inderal perfectly well. EVERYbody has some degree of natural tremor due to coffee, stress, etc. I went to hand therapy and had a number of steroid shots in my right hand years before ever going for Botox to help with the pain in my right wrist. I was tested for carpal tunnel etc etc etc and do have a small nerve sheath cyst in that hand that was never fully explored as a cause for pain. I started working left-handed and solved many problems.

I don't know about the slow motion being PD specific. If it was dystonia there are more than 50 diseases with dystonia as a primary symptom. There are also many diseases and disorders with bradykinesia, then there is primary and secondary bradykinesia (causes very different). IMHO I don't see that there was a reason to start your mom on sinemet right away when there are dozens of tests for bradykinesia involving things directly measured with EEG for example and distinguishable from PD. Good link _ tho i can't yet post links look under http dot brain.oxfordjournals dot org /content/124/11/2131 dot full -- see if that non-html text will lead u there.

I found that reference on a quick Google and it's full of causes for BK and ways to tell it apart from PD and other disorders. I never had bradykinesia UNTIL after I started sinemet. My only symptoms were slight adrenaline sourced tremor in right hand and diminished sense of smell. THAT's IT! Part of the diagnosis of this disease process has to some extent rely on response to medication. It sounds to me like your mom is caught in a game of catch 22. Too little or too much and she's very miserable to boot. I would march straight to another doctor or 5 or 6 until somebody explained to me why this could be nothing else other than PD.

Since there is NO WAY to tell without an autopsy I think I can safely say no doctor that is honest can ever say I'm sure it's PD. Certainly if NOTHING else has been tried I would not be willing to accept this as a diagnosis. Has she been tested for Lyme (not the antibodies since if she's not actively shedding or flaring the antibodies will be absent) but the Lyme itself? Has any other testing been done, is there any OTHER history of injury, meningitis, surgery, head trauma, hydrocephalus, viral infections, bacterial infections?

My brother has rheumatoid arthritis (and some other odd immune disorders), which is in remission now. His docs believe due to an immune response much like gout to a bug he picked up in Mexico. Last week we were comparing notes about my swollen and painful joints just since weaning from sinemet and wondered at the similar symptoms. The year before I was dx with PD I went to Mexico, contracted a bug (he Cozumel, I Cabo) and I was hospitalized and tested for months after my visit. I was dx with acid reflux and still take previcid for it. I now see many references to GERD/reflux being caused by bacteria/viral vectors and can't help but wonder at the similarity to our immune responses. The same year I was stricken with my first outbreak of recurring viral meningitis (which I've had 8 times now) not long after a spinal surgery.

I asked many times if all of this didn't seem awfully coincidental in timing but was dismissed by dozens of doctors. Now it seems common knowledge with this last out break I had that it is common knowledge that the Herpes Virus is a common cause for recurring viral meningitis and my problems all started after my body was invaded by an outside vector and my CFS space was opened to that contamination. What seemed obvious to me in 2001 is now obvious to a lot of other people too.

I think sinemet is a quick fix for this society that demands full bore function and blasts ahead without thinking to tell us. This drug could kill you on any day you can develop NMS and die because it will not be properly diagnosed at an ER. Even if you take in literature it freaks out the hospital and they don't want to touch you or it nor do doctors. I would try everything under the sun before I let a family member embark on the sinemet path. Don't stop what she's doing now without a doctor.

After you've been on sinemet for 5 years as I have it becomes devastating. It is the most horrific thing I've ever gone through to get off. More horrific than PD, cancer (which I also beat), or the spinal surgeries. I'd be asking some very tough questions before anybody in my family allowed that pill to pass their mouth.

Every symptom and manifestation that I had was 100% sinemet and I was burning through neurologists like trees. I always felt that something wasn't right about all of this. Had I not been so distracted by a very bad divorce I would have pulled my head out sooner perhaps and asked some harder questions. In retrospect EXTREME stress was my catalyst in an abusive marriage and being sick. My Mom has a friend similarly dx'd with MS who didn't have it or anything.

Based solely on your Mom's less than ideal response I sure would walk to another doctor-maybe specifically WITHOUT the predisposition of a prior diagnosis at first to explore ALL of the possibilities and treatments. I can't stress enough that exercise and PT are essential regardless. All of these things are use it or lose it propositions. Sinemet tends to immobilize so much that often shear weakness becomes a pathology all by itself and leads down the same road to preventable misdiagnosis or progression too fast.

I am so weak after withdrawal and hurting my hip with cramps 2 mos ago that I could not lie on my side and lift my right leg with knees bent. I was tough and active and sinemet whipped me in 2 mos to where I can still barely turn in bed. I worry each day-will my body make dopamine again? But it is-I'm getting dyskinesia on lower and lower doses. There is no other answer. My brain is kicking it up, imperfect still, but growing better.

The bradykinesia or OFF is also a result of long term sinemet (which has only 3-5 years maximum efficacy-docs don't tell u that usually) use reaching the end of it's optimum efficacy. So the answer is BK is not uniquely PD, it's also sinemet caused, and many many other causes. As you point out we are ALL DIFFERENT. Why are we being rubber-stamped??

I have much LESS slowness now with less sinemet. My doc (gp) said WOW you look BETTER today. It is vanishing very slowly as I rage. Do please consult a doc about reducing this drug-don't do it on your own. Research DAWS and NMS, print it (to take to the ER if needed) and talk to a doctor about it before an emergency. Be ready-be educated-be forceful in your treatment advocacy. A delay in proper treatment can kill 20-80% of those afflicted with DAWS. You are more likely to get it again on re-taper if you got it once.

I respectfully disagree that BK and blank stare are classic PD. There are hundreds of possibilities. At any rate you try other options, there has been no proof this or any delay causes a definitive change. Save it for when she truly needs it if this is PD. It is a short widow and PD does not shorten life. You question of dependence is a good one. ASK! We don’t know. I apparently am unique-but I don’t buy that. I bet I have many welcome friends.

This drug is a poison (ALL DRUGS HAVE SIDE EFFECTS), admittedly sometimes worth the pay off. We all should be asking harder questions before taking the plunge. If it unknown how it works do we trust something with no right answer unless we try other less harmful permanent things?

I hope very much this is something simpler for you. I urge you to ask and ask and ask again and BE CAREFUL with this wildfire. I wish you luck also. I am reminded of the words of Dylan Thomas

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.