Hello,

It is good to hear from you. PD can be so hard to diagnose as it as really boils down to us all having similar symptoms but with different ways of getting there. I am glad you took your mom to a hospital with strong ties to research; I think they attract a higher caliber of doctors or at least ones who keep up to date. It sounds like you first saw a resident doctor in training and an attending doc (#2)- this is very common in teaching hospitals, so if you continue to seek other medical opinions you will encounter this more.

As for the Sinemet CR, I can vouch for it as being a dud. It looks like your doctor is making a wise decision in placing your mom on a low dose of IR Sinemet at more frequent intervals. It is very possible that on the CR your mom was undermedicated or simply did not achieve a plasma level of levodopa in her system that was at therapeutic level.

We do have some atypical people here who have been diagnosed and 'undiagnosed' several times over. It is supremely frustrating to us all that there are no scientific measures in place to definitively diagnose us, so it is imperative that patients stand firm. Your mom is very lucky in that you really inform yourself and advocate for her. One question I would have for the doctor is why (besides lack of response to l-dopa) they think she is atypical? What else could it be?

Finally, this may be too obvious or simple, but sometimes gets overlooked. Has your mom been tested on her thyroid levels? I have read of several cases where an older person has presented at the hospital with Parkinsonian symptoms when in reality they had a thyroid or parathyroid disorder

Hang in there.

Laura

Hi Matthew,
It is great that you are there helping your mother find the best route through with her condition. It sounds as though this MDS facility is really trying to make things the best they can for her, and their approach sounds to be really good.

It is true that CR can sometimes give inconsistent results, leading to problems, and I have read that many neuros prefer to have their more elderly patients on the IR version. But I think that getting a good medication regime that works for the individual is anyway a matter of trial and error, and that a good doctor will be looking for certain outcomes to the changes they have made that will help them to a clearer diagnosis.

There are many people, young and old, who have had the 'atypical' label applied to them at some point or another, I am one of them. In part this comes because we get seen at different times in our medication schedule, we don't always 'look' the same, but also there are the variables between PD and PS, and there will be a natural reluctance on the part of doctors to medicate people who may not benefit from the medication. So it is good that your mother is going through this process - and even better that you are there to support her.

Best wishes for a good outcome to the next months changes, it takes time for dopa starved brains to settle down, and to generally rebalance. There is also an emerging picture of doctors who are understanding that at least in the very early stages of medication less can actually be more........

Take care
Lindy

WHEW, been spending time to read this thread, your poor mother has been through the gamet. Whenever I read "atypical Parkinsonism", it immediately brings to my mind Lymes Disease. LD mimics a lot of PD symptoms. If your mother has had any exposure to ticks, even without any known bites, you might consider getting her tested for LD using the more expensive but more accurate test called Western Blot by Igenex (NOT the test by Labcorp). Just a thought, Good Luck

TG

Hello All,

Let me try to address all of the questions.

Laura:

I am not sure why besides the lack of response to ldopa they are thinking it may be atypical. I believe it it still too early to tell, and they want to see how my mother reacts to this new medicine schedule.

No, she has not had her thyroid tested.

All:

Thank you for the concern and the replies. Below is a breakdown of her new medicine schedule for the next 3 weeks:

Week 1:

6:30 AM:

2 Sinemet IR 25/100

10:30 AM:

2 Sinement IR 25/100

2:30 PM:

2 Sinemet IR 25/100

6:30 PM:

2 Sinemet IR 25/100

9:30 PM:

1 Sinemet CR 50/200

Week 2:

6:30 AM:

3 Sinemet IR 25/100

10:30 AM:

2 Sinemet IR 25/100

2:30 PM:

3 Sinemet IR 25/100

6:30 PM:

2 Sinemet IR 25/100

9:30 PM:

1 Sinemet CR 50/200

Week 3:

6:30 AM:

3 Sinemet IR 25/100

10:30 AM:

3 Sinemet IR 25/100

2:30 PM:

3 Sinemet IR 25/100

6:30 PM:

3 Sinemet IR 25/100

9:30 PM:

1 Sinemet CR 50/200

Note that although the schedule reads "Sinemet", she is taking Carbidopa/Levodopa generic for both the IR and the CR.

She started her "week 1" today, Sunday the 14th. She had a horrible day. She was moving extremely slow and just claimed she felt "out of it". I was with her from about 12:30 PM until 4:30 PM, so I was with her when she took her 2:30 PM dose. Is this coincidental that she was very bad on the first day of her new schedule, or is it because of something else?

I spent some time last night and the night before reading about some of the atypical forms of PD/PS that are out there and needless to say, it scared me quite a bit. Some of the atypical forms appear to be more progressive and more difficult to treat than PD because of the atypical individual not responding to ldopa medicine therapy.

Concerned,

Matthew R. Smith

Matthew,

I am interested in what others have to say about your mother's med schedule/dosage but to me it seems like a heck of a lot of CD/LD for someone who had shown few symptoms just 1.5 years ago. If she shows deterioration/intolerance with the 1st week drug protocal, I would not hesitate to call her doctor before going to the 2nd week.

Before I was Dx with PD, I too had 2 cervical spinal surgeries for stenosis and herniation. After my 1st surgery, I looked like a stroke victim - couldn't hold up my head, monotone, couldn't pick up my arms or swing them, shuffled, terrible, terrible pain. Three months later, an MRI was finally done and showed a bleed on my spinal cord. It took me a full year to recover nd never got back to baseline. The 2nd surgery ent better but little improvement in my symptoms - no arm swing, stiffness, cog wheeling, blank face, soft voice, shoulder/neck psin, numbness, etc. First month they put me on sinemet it did nothing for me. 2 yers later, I tried again - had response within 20 minutes - I could walk smoothly and move my arms. I saw a LOT of doctors during that time. I have had PD for 20 years and never took that much CD/LD as your mother's med schedule. I had DBS one side done in 2006 and at this time I take any where from 1 up to 3, usually only 2 25/100 mg per day. Now I think that I am unusual in t he PD world but for me less is best and I control how much meds I want to take. Sometimes it is a fine line between too much ldopa and too little. It takes a lot of adjustments to get it just right and just as with kids, the minute you think you have it figured out, it changes on you. Perhaps some other members can give their prospective to you. Good luck
TG

Hello TG. Thank you for your detailed replies. Our new specialist insisted that we call her after week 1 and provide an update as to how my mom is doing. So to your point, we will be doing so. I believe part of the reason that there is so much cd/ld here is to determine if my mom is undermedicated. The specialist specifically mentioned this. The readings that I have been coming across that freighten me a bit as the following:

http://www.cmdg.org/Movement_/Parkin...nsons_plus.htm

http://www.parkinson.org/Parkinson-s...Parkinson.aspx

I will be calling my mom tomorrow around 5 PM to see how she is feeling.

Matthew R. Smith

This does seem like an incredible amount of drugs, wow. Regardless of amount, I wanted to let you know that generic sinemet did NOTHING for us, we have to take name brand. There may be a post or two here about it, but for sure you should search the web on the differences between generic and name brand. ALL they have to have in common is the active ingredient, which means that everything else, fillers, stabilizers, other ingredients, can be different...which leads to different absorption rates and levels, etc. etc. and you quickly see what havoc that can wreak on you. I think it is totally deceptive that generics are allowed to be passed off as "identical" when they are NOT. If they were bioavailably identical, then great, we'd have the same absorption rates, etc. Most docs do not know this nor how varied generics can be from name brand. Do the research and see if this might not also be an issue for your mom.

I quite agree. I make it a practice of asking for a 30 day prescription of brand name drug for all new to me drugs. If it works, then I fill a 30 day supply of generic - if it has same results then I get 90 day supply. Often you can try out the brand name drugs by asking for free samples. When you do get generiic, note the manufacturer on the bottle - if it is not the same, you just might notice a difference. (good reason not to empty one pill bottle into the new bottle) . You can ask your doc to write prescription for brand name or specific manufacturer...but you might have to fight your insurance.

TG

Matthew,

Those are all scary diseases but the fact that your mother has responed, although not perfectly to C/L Dopa, is a good indicator that she has PD. Even though sinemet is "gold standard" does not mean it will take care oif all PD symptoms. You may be looking for a normal mother but with PD, normal does not ever come back. But with good doctors and patience, a drug combination will be found to help her feel a lot better. Keep up with the diary and continue to document - that is a big help for the docs. Tke Care

TG

Hello All,

Thank you for the replies and the concerns. I spoke to my mother on the phone this evening around 5:00 PM EST to see how her evening last night and how her day went today. She took her 9:30 PM CR pill last night and went to sleep around 11:30 PM. She woke this morning and took her 6:30 AM dosage of IR around 6:20 AM. When I asked her how she felt this morning, she said that she felt she was a bit more "alert" this morning than usual. When I asked her how she felt in general, she mentioned that there were a few times throughout the day where she thought to herself "I do not feel too bad right now", but also commented that her mobility was still slow and rigid. I personally physically heard a bit of improvement in the amplitude and clarity (less mumbling) in her voice around 5:00 PM EST this evening. We spoke on the phone for about 25 minutes which means she was quite talkative. She comosed an e-mail to me at 10:14 AM this morning which had virtually no spelling mistakes or typos. In the past, due to the limited dexterirty in her hands, her e-mail compositions would have spelling mistakes (because I know that spell check would confuse her) and typos because she is apprehensive to use the backspace key to go back and make corrections. I noted all of the aforementioned in my journal and also conveyed our (the forum) most recent conversations last evening. I really would like to speak to the neuro more in depth with regard to the CD/LD versus Sinement. Note that I have asked 2 neuros the same question with regards to brand name versus generic and both (one being the specialist from last Friday) indicated that there is no difference, however, after speaking to individuals with personal stories to tell, I would like to push the subject matter at hand a little further.

TG - I do see your point with regards to my mother realizing benefits from the CD/LD at one point in time which most likely means she has the PD. That exact thought has crossed my mind, my only concern is that when I read some of those scary diseases I see other factors in common such as the majority of patients with the atypical forms typically do not have tremors. My mother, at least at this point, does not have tremors. The other big sign is the mention of urinary and bowel incontinence. My mother has had the urinary incontinence for quite some time, and I have been told that within the past 2 weeks she has been having issues with her bowels. Is incontinence an issue with PD?

Best Regards,

Matthew R. Smith