I have a longstanding dx of Primary Lateral Sclerosis but a new neurologist thinks I show Parkinsonism traits (??) slowness in my hands and feet, finger tapping and opening/closing of hands. She has started me on Carbidopa-Levo 25a -100, and recently Lodosyn 25mg 3x daily. I have severe nausea but the dose does speed up my finger tapping quite dramatically, though not sure if it's a good trade-off considering the nausea. My questions:
Since I have a good reponse, finger tapping wise, should it also improve my walking? I drag my right leg (foot drop) and sometimes the left also, get worse the more I walk, but sometimes I walk really good. This has been a mystery since I shouldn't have such fluctuations with PLS, so maybe a Parkinsonism type thing? Neuro says not Parkinsons, but a Parkinsonism type thing.
Does the nausea eventually go away? If not, I really don't want to take the stuff.
Last question, my neuro tried to get the Spect scan that measures dopamine levels, but couldn't find where we could get it done other than UCLA, and said I'd have to pay out of pocket. Any suggestions on who does it? I live in the San Diego area.
Thanks for any help with these questions.

In the U.K and Canada you can get Motilium (domperidone)It is routinely prescibed when P.D drugs are first taken here in the U.K.You may be able to get some from a reputable source on line. Secondly,always make sure you have your meds with something to eat.Something as small as a couple of dry sweet biscuits helps. (Do you have rich tea biscuits in the U.S as they are ideal)Consult your neurologist or Primary Care Doctor and see if you an divide the doses in half and then take them more frequently.Hang on there. The nausea does go.

Hi,

First, we don't have any definitive test for Parkinson's or Parkinsonism. It is primarily done by clinical diagnosis with tests such as finger tapping, watching walk for reduced arm swing, etc. Hardly scientific, but it's the standard. PET or SPECT scans can be done to check dopa levels in the brain, but is mainly reserved for research; in fact, most insurance plans will not cover it. Early Parkinsonsim resembles other neuro disorders, so it is difficult for neuros to pinpoint exactly what is going on. Most of us in the States go through a general neuro battery and history in the office, undergo an MRI to rule out anything else, and if we show 2 of 3 cardinal signs...we have PD.
Well, really no one knows for sure that we have it until an autopsy is performed and we end up with something called Lewey Bodies in our brains.

Often, since everthing is so scientific and exact with our diagnostic process , a neuro will have the patient undergo a Sinemet (aka levodopa) challenge as a confirmation. That seems to be the clincher if you do have it your body responds and if not...?? Keep in mind there are other rare things that half-heartedly respond to levodopa.

Is your neurologist also a Movement Disorder Specialist? You may want to follow up and see one if not as they are better trained at discerning between any other oddball neruromuscular thing we may get.

Hope this helps a little,

Laura

P.S. Not sure that it was suggested but I find taking the med with a few crackers (try to limit protein as it interferes with drug absorption) instead of on an empty stomach.

Hi jenlyn,
i just want to add be patient the nausea should go away as your body becomes used to the Carbidopa-Levodopa, if it doesn't then you may have to take a diffrent route. Right now, the only "test" for Parkinson's or Parkinsonism
is to see if you respond to the Carbidopa-Levodopa and by the way it sounds you are responding to it. Also, do make an appointment with a Movement Disorder Specialist. The difference here is like having heart surgery by a specialist or some kid down the block. Movement Disorder Specialist sees the disease everyday where your primary care doctor or local neurologist might see it once or twice year.

Good Luck and keep us posted

GregD

[QUOTE=Conductor71;617238]Hi,

Keep in mind there are other rare things that half-heartedly respond to levodopa.


What kind of rare things??

My neuro says she doesn't think I have Parkinson's, just some kind of Parkinsonism, but I'm not really sure what that means and she says she needs to do more research. I had an aunt that died of Progressive Supranuclear Palsy. I sure don't want that one!

My new neuro is a Movement Specialist, I was referred to her because some of my symptoms (PLS) have changed over the course of 12 years and the dx of PLS is now questionable. Primary Lateral Sclerosis is supposed to be really rare, maybe 500 people in the U.S.
It also has no definitive tests, just upper motor neuron signs like Hoffmans and Babinski as well as hyper reflexes. My reflexes used to be quite brisk, but now are either non-existent or close to it.

Thanks for all the help.
Jen

[QUOTE=jenlyn;617617]Jen,

I am so sorry; I didn't mean to alarm you. It's funny (odd funny) how neuro's and people who hear of our diagnosis as do we that "it could always be worse". I'm guilty of saying that to myself and my initial reaction to others who say it is to restrain myself from kicking them in the shins We know as people who have or have had something weird going on neurologically that this does little to make us feel any better.

I really was just expressing cynicism because there is much doctors and researchers do not know. I commend your doctor for diagnosing you with Parkinsonism because she doesn't feel confident in committing to the whole deal. In essence, we all here have Parkinsonism, without any definitive tests or any real agreement on what Parkinsonism is, how can we all know for sure, I guess is what I am trying to say.

My story: I was pegged with Essential Tremor for 6 years prior to my PD upgrade; for all that time told they were two distinct disorders. Alas, recent research has revealed dopa loss upon PET scan, levodopa responsiveness, rigidity, slowness (very mild Parkinsonism stuff) is evident in people with Essential Tremor, so I am at a loss as to what is going on with me. Coupled with I do not have any PD biomarkers being researched. In fact, if I just look at symptoms and treatment, I am a poster child for a rare genetic mutation of Ataxia SCA12- it presents as Parkinsonism. This is super rare too. One thing that always makes me laugh too with neuros is how readily they dismiss anything other than PD by saying "Oh, that's extremely rare." Hmmm...like Parkinsonism in a 34 year old woman is as common as a cold.

I'm trying to say, please hang in there, ask lots of questions, push for tests, be your own best advocate. It sounds as if you are in very good hands right now. If I were you, given the longterm (misdiagnosis?) you have grounds for getting your insurance to cover the cost of a PET scan. Please keep us posted on your progress in getting an accurate diagnosis.

Laura

Another disease which responds to levodopa/carpadopa is a type of dystonia.
Do not take your doctor's word as truth. My insurance covered the the cost of both a F-DOPA scan and a Parkin genetic test.

To correct a statement made earlier in the thread: Lewy bodies do not act as the determination of the existance of Parkinson's disease. If you have Young Onset Parkinson's (YOPD) disease you:

• Do not have Lewy bodies if you have one or more mutations in your Parkin gene. Up to 40% of YOPD who have had their Parkin tested, have been found to have at least 1 mutation.
  
• The mutations cause a protein called alphasynuclein to over produce and create folds in the mitochondrial system which is the delivery system from the brain, through the blood brain barrier, to the body to deliver dopamine.
  
• The mitochondrial system eventually begins to clog with the misfolded proteins and less and less dopamine can go through. Eventually, the dopamine clogs up in the basil ganglia and the overabundance of dopamine slows the production of the neurons, which produce dopamine, causing apoptic death of the neurons.
  
• YOPD with mutations have a very sensitive reaction to the introduction of Sinemet at first. The symptoms for these patient's also shows a slower progression of the disease.
  
• YOPD is not considered a morbid disease, but dramatically affects the quality of the patients life.
  
• Dopamine is used not just to initiate movement, it is also part of the fluid behind the eye, (almost 90 %), it is the counter hormone to lactase, and is produced by the body to stop the production of milk in a woman's breast ducts when it comes time to wean her child. Dopamine stops or slows down the growth of tumors and is used in chemotherapy.
  
• Until research is done on persons with positive mutations of the Parkin gene, to discover what combined with the mutation causes Parkinsonism, Doctors can only treat symptoms and not find cures.

The brain is so complex. Research is only beginning and reseachers are finding out how much they don't know. It is the last frontier of the body to be explored and the hardest to understand. No one deserved this disease. But no one can blame science for not having a cure. Someday they will. Just as many thousands died of plagues, polio, and other diseases in the past before Science found antibiotics, polio vaccine, and immunition shots in our present, we were born before the brain has been understood.

Peace to you,
Vicky

I also have a foot that drags. My old neuro said it is not true foot drop. My new neuro said it is foot drop and is skeptical that it is caused by Parkinson's. I think you are lucky you at least had a misdiagnosis. I had some doctors tell me there was nothing wrong with me and it must be anxiety or depression. It took 7 years to get my diagnosis of Parkinson's because my symptoms are not typical. I now have a resting tremor and difficulty initiating movement, which are typical of Parkinson's, and I respond well to levodopa. However, I recently moved from Pennsylvania to Florida. Hence, a new neuro whom I need to give lots of explanations to.

BTW, yes the nausea improves. It comes back when you have to increase you dose though.

The sickness does not always come back.John has increased dose AND added Madopar to his Requip XL with no sickness.Our neuro is a cautious man so any increases are very slowly made.

Hi Chicory,
I went through the whole conversion disorder theory, many neuros saying I didn't have anything wrong, then when I took a drug for HepC, my neurological symptoms dramatically increased, leading to the dx of PLS, a rare variant of ALS. I've been kind of atypical all along, so not too surprised to have some other stuff being discussed. It is what it is, regardless of what they call it, just happy to have a dx for medical and disability purposes. Plus, when you don't have a dx, everyone things you're looking for sympathy, nothing really wrong. I could never understand why people would think I'd make up walking funny or slurring my words when I talk. It really isn't very attractive.