[jcitron]

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.

[ol'cs]

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

[jcitron]

Originally Posted by ol'cs

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

[jccgf]

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

Celiac disease has been associated with ataxia and other neurological signs but has not been associated with paroxysmal nonkinesigenic dyskinesias (PNKD) to date. We present a child with biopsy-proven celiac disease and a movement disorder resembling PNKD since the age of 6 months. She had complete resolution of her neurological symptoms with introduction of a gluten-free diet. Because a susceptibility locus for celiac disease has been reported on 2q33 and studies in PNKD show linkage to 2q, this report suggests further genetic investigations around this locus may be useful. We also review the literature regarding the genetic susceptibility to PNKD and celiac disease. © 2007 Movement Disorder Society
Received: 17 May 2006; Revised: 17 May 2006; Accepted: 30 June 2006

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

[reverett123]

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]

[jcitron]

Originally Posted by jccglutenfree

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

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

[dorrie]

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

[jccgf]

Hi John,

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'm glad to hear that you were getting shots!!! I hope you still are for several reasons:

1) Low normal B12 can cause neurological symptoms. For example, my level was a low normal of 294(150-1100) when my B12 deficiency was diagnosed, after three years of progressive symptoms (although most cascading in that last six months). My symptoms have all resolved (mostly...some minor memory and concentration problems still). A lot of improvement happened over the first three months, but improvements continued into the first and second year. The literatures says anything under 400 should be of concern in someone with neurological symptoms. You will find some great references here.

2) Bringing the blood level up can be done in a matter of months, but repairs can take months to years, and a steady supply of incoming B12 is necessary for those repairs to be made. While most people will show improvement within the first months, it can take longer depending on severity and duration of the deficiency and how much damage must be reversed. SO... if you aren't already... keep taking in B12. Oral B12 in the active form of methylcobalamin, in dosages of 1000-2000mcg, are generally recommended to treat B12 deficiency. I sure do hope that will be the recommendation you receive!!! Oral B12, in high doses, works just as well shots in most people, but close monitoring will assure it. Keep reading up on the subject of B12 deficiency! The symptoms can be much more severe than most people, and even most doctors, realize. I don't know how many months its been that you've been getting shots, but I'd give it at least a year before deciding it hasn't helped any.

3) Be sure you are taking supporting supplements, especially B-complex, magnesium, and a multivitamin. They all work together, and need each other. You could also be low in something else that may be preventing you from showing much improvement~ For example, I know B12, B1, B6, E, CoQ10 deficiencies can also result in neurologic symptoms.

eMedicine link on vitamin B12 associated neurological diseases:
eMedicine on Nutritional Neuropathy


4) When you ask your doctor about gluten sensitivity/celiac disease, be sure to request that he include the antigliadin IgA and IgG tests. To save cost, and because another test is more specific to the actual intestinal damage of celiac disease, they usually only recommend anti-tTG and total IgA for celiac screening. You need to be concerned about any degree of gluten sensitivity, and the antigliadin antibody tests are better indicators of that.

Dr. Marios Hadjivassiliou, the authority on gluten ataxia and other gluten related neurological disease says this:

Hadjivassiliou says, in "Gluten sensitivity as a neurological illness":

"IgG anti-gliadin antibodies have been the best diagnostic marker in the neurological population we have studied. IgG anti-gliadin antibodies have a very high sensitivity for CD but they are said to lack specificity. In the context of a range of mucosal abnormalities and the concept of potential CD, they may be the only available immunological marker for the whole range of gluten sensitivity of which CD is only a part. "



Hadjivassiliou and Grunewald From:
The Neurology of Gluten Sensitivity: Science vs. Conviction
"Neurologic manifestations of gluten sensitivity are a scientific fact, not a theological issue. Whilst the debate continues, we owe it to our patients to screen them effectively for gluten sensitivity with the simple widely available antigliadin antibody test so that we do not in the meantime deprive them of a harmless but potentially effective treatment in the form of a gluten-free diet."

I think it is worth exploring these things~

Cara

[jccgf]

[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

[jcitron]

Hi Cara,

I've been going for shots for about a year. At my last stab-session, the nurse mentioned the pill form and that I should consider taking it instead of the shot.

In the mean time, the increased Sinemet which started a week ago last Thursday has made a dramatic improvement in my mobility. I don't have to push myself out of the chair anymore using my hands, tremor has subsided somewhat, and the best of all my piano playing is back somewhat! I had the best practice session today than I've had in about 2 months!

John
A much happy camper than a week ago.