Hello everyone!

I've been a lurker over here from time to time, and I've decided to join in the fun.

I was diagnosed in November 2006 with an atypical form of Parkinson's. I have some, but not all the symptoms, and my current neuro is a pleasure to work with.

This nasty road started officially in August 2004, but I was dealing with cramps in my feet and some stiffness prior to this. I would get these nasty awful cramps where my feet would feel like the toes were turning in and the big toes would stick straight up. They would happen late at night and usually in the early hours of the morning. Other times they would hit me when I was driving, and I ended up pulling over to the side on the interstate a few times.

At first I blamed the cramps on not drinking enough water, or they were caused from too much bike riding, my too low a car seat, or anything else that could cause the cramps. The stiffness too I thought was good old Arthur visiting me since I live in drafty cold New England.

In May 2003, my left foot decided to turn in more than the right, and cause more pain, but I was born with a clubbed right foot that has been surgically corrected, and thought perhaps the left foot wanted to join its partner. At this time, the right foot decided to try to turn in, and my second toe rode up on top of the big toe. No matter how much I tried those little pads between the toes, they didn't help straighten out the right second toe. {1}

In July 2004, I was at my sister's wedding, and the spasms hit my feet again. I could barely walk, and had to find a place to sit down quickly. The weekend after the wedding, I was practicing the piano like I always do when I developed a tremor for the first time in my right hand. This was when I got scared and called my PCP. I also was having a difficult time getting out of chairs and other low seats like my car or the couch. My arms and legs were so stiff I felt I couldn't stretch them enough, and I was so tired that I could sleep forever if I was left alone. I also couldn't play the piano without difficulties as well. I am a Classical pianist with over 35 years of training. I never went into music as a career, but it has remained the focus of my waking hours when I'm not working. I was becoming depressed because of this.

After some x-rays, an MRI, blood tests, and the EMG, he concluded that the Lipitor I was taking raised my CPK levels. He had me stop the Lipitor, but that didn't stop the tremor and the cramps. I ended up at the first neuro in June 2005. Within 3 minutes of the 13 minute visit, he handed me a brochure about dystonia. He didn't listen to me about the stiffness or the other things that were bothering me. He only picked up on the fact that I play the piano.

He said there's no cure, but I can go for Botox treatments if I wanted them. I looked at him puzzled because his diagnosis was so fast. No matter how much I tried to tell him about the other things, he kept saying it's just dystonia.

Well I didn't go on Botox, and he gave me some Klonopin to relieve the spasms. This did absolutely nothing for me, but make me feel worse. He then tried Baclofen, but that didn't do too much either. Eventually, in the late fall of 2005, I asked him if this was dopa-responsive dystonia, seeing that nothing else was working. He gave me the Sinemet to try, and within an hour after the first dose, I felt 100% better. I mean the muscles stopped aching, the hands and feet stopped cramping, and the tremor stopped! I could even play the piano again! I was in heaven!

When I told him at the next visit, he didn't say anything and still insisted it was dystonia. Well things got worse, and he ended up increasing the dosage to help with my arm swing, which had slowed down. I was also tightening up again, and my left hand was making a fist so tight that I had bruises in the palm.

I still had a gut feeling that this isn't dystonia, and I insisted on a second opinion. After a couple of messed up reports to my PCP, I was allowed to go to whomever I chose. So, now I am over at the Lahey Clinic and with one of the best doctors on the staff. She asks good questions, and is willing to listen to me if I have questions.

Over the past year since I first saw her in November 2006, I've gone from Sinemet 25-100 , 4-1/2 pills per day, to 6-1/2 per day last week because I was going off during the night and feeling miserable the next day. We had tried Mirapex initially with little results other than making me search for light leaks at the most inopportune times.

In April of 2007, she put me on Amantadine, which helped me so much with my fatigue, and this is where things are now. I take the Amantadine 3x per day, which was titrated up from 1 to 2 to 3.

This is both frustrating and discouraging, but I find that if I stay positive and busy I can deal with it. I work full-time because I want to (and have to really) because it keeps my mind fresh. I have good days and bad days, so I take the good periods in, and ride out the bad ones the best I can.

John

{1} I noticed that when I'm off, my right foot begins to pull in more, and the 2nd toe pulls in tighter over the big toe.

John- Hope you hang on here for years and years. We always can use another PWP with experience. I hope that you become a source of both comfort and inspiration to those who really need it.
I read your case with interest, sounds a bit atypical, but not really all that way out in the woods, you know by now that with this disease, almost anything can happen. The dystonia is common. It usually (?) hits us in the neck, and a diagnosis of "wry neck" is given, trouble is it lasts for 20 or more years.
Doctors are the damndest to deal with , aren't they. It's a good thing we have "the sinemet test", or some of us would be in the wilderness far longer. I've heard some real horror stories around here over the years. I hope you have lots of insurance, if not, try to "sneak" some in before they stamp PWP on your forehead!
Enjoy your "honeymoon"; you may feel OK for quite a number of years before the grade gets a it steeper. If you can, quit work and enjoy your honeymoon. I was given that advise by my boss, but was too stubborn to listen to him. G'day. cs

Hi CS,

I plan on hanging around here for a long time. Doctors are wonderful (yay). They either are really great, or they treat us like it's all in our head and there's nothing wrong. I wouldn't be here, and working if I didn't push the medical system to do what I needed. The insurance companies fight everything, and the doctors cave in. Right now I have decent health insurance, and I plan to use as much of it as they'll let me.

Believe me... I am enjoying the honeymoon.

Regards,

John

Hi! I'm not a regular here... have just been dropping in with the post about narcolepsy, PD, Lewy Body Dementia and gluten~

Your mention of dystonia made me think of something.... not sure about the different types of dystonia, but gluten sensitivity might be something worth looking into... based on this post~
http://neurotalk.psychcentral.com/sh...ad.php?t=25658
Cara


Have you ever had your B12 level tested? Be sure it is in upper range. B12 deficiency can also cause wide ranging neurological symptoms, including some you mention~
http://www.parkinson.org/NETCOMMUNIT...=458&srcid=377

I have often wondered what similarities we would find if various forums compared notes on their various conditions. I even talked with docjohn about it at one time and he was supportive. If there was a forum for something like that would you be interested? There are several overlaps that I know of and I'm sure there are others. Just hitting Medline with "celiac parkinson's" turned up some interesting bits:

1: Martin A, Romito G, Pepe I, De Vivo G, Merola MR, Limatola A, Gentile V.
Transglutaminase-catalyzed reactions responsible for the pathogenesis of celiac
disease and neurodegenerative diseases: from basic biochemistry to clinic.
Curr Med Chem. 2006;13(16):1895-902. Review.
PMID: 16842200 [PubMed - indexed for MEDLINE]

2: Ihara M, Makino F, Sawada H, Mezaki T, Mizutani K, Nakase H, Matsui M,
Tomimoto H, Shimohama S.
Gluten sensitivity in Japanese patients with adult-onset cerebellar ataxia.
Intern Med. 2006;45(3):135-40. Epub 2006 Mar 1.
PMID: 16508226 [PubMed - indexed for MEDLINE]

3: Ostrowski M, Izdebska M, Grzanka A, Zuryn A, Grzanka D.
[The involvement of transglutaminase 2 in autoimmunological diseases]
Postepy Hig Med Dosw (Online). 2005;59:334-9. Review. Polish.
PMID: 16012394 [PubMed - indexed for MEDLINE]

4: Pellecchia MT, Ambrosio G, Salvatore E, Vitale C, De Michele G, Barone P.
Possible gluten sensitivity in multiple system atrophy.
Neurology. 2002 Oct 8;59(7):1114-5. No abstract available.
PMID: 12370481 [PubMed - indexed for MEDLINE]

5: Kim SY, Jeitner TM, Steinert PM.
Transglutaminases in disease.
Neurochem Int. 2002 Jan;40(1):85-103. Review.
PMID: 11738475 [PubMed - indexed for MEDLINE]

6: Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ,
Milford-Ward A.
Does cryptic gluten sensitivity play a part in neurological illness?
Lancet. 1996 Feb 10;347(8998):369-71.
PMID: 8598704 [PubMed - indexed for MEDLINE]

7: Wakabayashi K, Takahashi H, Ohama E, Ikuta F.
Parkinson's disease: an immunohistochemical study of Lewy body-containing neurons
in the enteric nervous system.
Acta Neuropathol (Berl). 1990;79(6):581-3.
PMID: 1972853 [PubMed - indexed for MEDLINE]

8: Wakabayashi K.
[Parkinson's disease: the distribution of Lewy bodies in the peripheral autonomic
nervous system]
No To Shinkei. 1989 Oct;41(10):965-71. Japanese.
PMID: 2557873 [PubMed - indexed for MEDLINE]

[quote=reverett123;153056]I have often wondered what similarities we would find if various forums compared notes on their various conditions. I even talked with docjohn about it at one time and he was supportive. If there was a forum for something like that would you be interested? There are several overlaps that I know of and I'm sure there are others. Just hitting Medline with "celiac parkinson's" turned up some interesting bits:

I'm not spending the amount of time online here that I used to, but I would certainly be willing to step in and contribute some of what I know about celiac disease and neurologic disease....which may not be a lot more than I've posted here today. You might be able to interest Heidi, the author of the Narcolepsy, Parkinson's Disease, and Lewy Body Dementia paper! She just posted on that thread .

This might be of interest~ Symptomatic myoclonus.

Cara

That's interesting about the celiac disease. I'll mention the gluten to my doctor when I see him in 2 weeks. I did have my B-12 checked when I went to the Lahey. It was low, but in the normal range, so I had to go for shots once a month. They made no difference in how I feel, and the symptoms didn't go away. My level now is normal according to the blood tests, and I have to go for another blood test next week to confirm this. I may need to go on the supplement if it's recommended.

John

Hey John Glad to have you here with us as a member! See you around the forums

John, I related to your love of playing to the way that tremor intrudes on my writing. Pain in the gluteus – some word choices here are due to software that censors by way of what artificial intelligence deems profane i.e. I had to use a*n*a*l retentive the other day.

You and so many people here are getting benefit from taking Amantadine and as I’m so tremor dominant I’m going to give it a whirl starting Tuesday. One thing I’m more aware of more than I used to be is that there are many PD symptoms that we get, do not get or get to differing degrees. Also, sometimes it’s hard to differentiate between symptoms and a medication’s side-effects. It surely helps if you have a doc that is a good listener and is intuitive. My neuro passed on a revelation last week that never occurred to me before. He suggested I keep 2 of my 8 doses a day of Sinemet 25-100 as PRN (Latin: pro re nata = as needed). He said that the non-PD brain responds to fluctuations in demands and stress and that I should consider managing my meds accordingly. Now, since you sound dominant re: dystonia (the foot cramps) the adjustment I speak of comes with a caution and questions for your doc – increases in Sinemet may cause dystonia. This tweaking, experimenting and scheduling of meds is an art. One last platitude for the morning: no matter how gifted a physician is – he or she cannot compare to a body that has ingested these various meds personally. This group, along with the search function, can quickly collate opinions and common trends derived from personal experience. I enjoy the many perspectives and personalities here and find people are friendly and helpful – even when you know some of them are having a sh*i*tt*y day. Methinks good management is what will win the day. Best regards, Guy

I would like to thank everyone here for the insight, and links that have been offered to me.

As I go through this ordeal, we call life with PD, I wonder what could have caused it, and where did it come from. In thinking back to my childhood, I recall being exposed to Chlordane and other pesticides. Could this be a cause? Could it have been a virus I had back in 1980 where the doctors thought I had type II Leukemia? Could this be the result of my reaction to Lipitor, which lead me down this path?

Who knows really. No one has been able to answer my questions so far including my own doctor. So hopefully, with the help of this very helpful group, perhaps we can not only answer my questions, I can hopefully answer some of yours.

John