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Old 05-21-2010, 06:31 AM   #1
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Shaking in my boots!

I have a problem that none of my doctors seem to be able to figure out and being the researcher I am, I have pretty much diagnosed myself with Parkinson's Disease. I know...I know...not smart, but I am so frustrated with lack of answers for my symptoms I am tired of waiting!
For the last 2.5 months I have had this on and off feeling of an internal vibration in my body...sometimes in my chest, arms and upper shoulders or sometimes in my legs. It is most noticable in the early evening and IMMEDIATELY upon waking for the first ten minutes I feel like I am hooked to an IV of caffeine. I have also had off and on for about 6 years this achey feeling in my muscles in various muscles at different times. Most recently with even a little exercise the muscle used will be sore for about a week. I ran the vacuum on Sunday and my right bicep hurt for 4 days. Felt like someone sucker punched me in the arm! My doctors tell me it is all in my head ...AKA anxiety. I have to admit at first if I took a Xanax the tremor went away, but now it barely does anything for the tremor inside.
I have had 2 brain MRI's, muscle testing, blood work out the you know what and everything has come back normal. I was thinking Perimenopause, because I am 41 but I am on the birth control pill and my OBGYN said I would not have peri symptoms while on the pill.
I have no visible muscle weakness, external shakiness, slow movements, etc. that are normally seen with Parkinson's. However, I know it is a sneaky little devil and presents very slowly.
Has anyone out there had an internal tremor that turned into Parkinson's and how long before the internal became external? Did you have any other symptoms besides the internal tremor?
P.S. My Neurologist says it is just anxiety and gave me the Xanax. So, he has pretty much written me off. Bye-Bye, don't come back here no more.

 
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Old 05-22-2010, 02:40 PM   #2
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Re: Shaking in my boots!

Hello,
I'm sorry to hear that you feel written off by the doctor. The symptoms you feel are real to you, whether they can be seen externally or not.

I am also guilty of "self-assuming" that I have early Parkinson's. Unfortunately, my MRI's and Lumbar Puncture were not indicative of PD, and say otherwise, they say MS ... I'm now labeled (benign) relapsing remitting multiple sclerosis. I do have the internal tremors upon waking, but also have the external tremors that I saw in my father when he was my age ...I was prepared to have PD ... not prepared to have MS. I know no one with MS. We have a lot of PD in our family's history.

PD didn't disable my dad until his eighties, though he had tremors etc. in his fifties and on. I was okay with believing that it might happen to me, too. He did not have any medication until his seventies, and then it was oral medication. But MS has an undefined, unpredictable prognosis, much more threatening than I might have felt if labeled PD. And it has daily injections for a treatment, designed to cross the blood brain barrier and attract and calm rogue T-cells in my central nervous system. I worry about that, but I comply with that.

While I don't feel written off by my the doctor, I certainly feel disbelieved ... I still think it's Parkinson's to be, despite the MRI images ... but I have accepted the MS prescription - an injection every night, one that burns like acid, one that I have to inject into a different body part every night ... I have to inject into fat, which means I have to look at (carefully) fat every night, to avoid the surface veins ... and I worry that I may be doing more harm than good - I certainly am psychologically, as I resent the med and am disappointed in myself for accepting it. I am now depressed and anxious.

Sorry - this isn't really what you came here to read ... I've been on the MS boards, but don't feel a fit there. So I've been reading quietly here. I've also begun seeing a counselor, and taking depression medication.

Regarding other symptoms, I do have osteoporosis, possible arthritis (muscle aches in upper arms) and take a statin for cholesterol. I used to have daily headaches but during diagnosis I altered my menu, avoid all meat and dairy and fried foods, have no more headaches and lost 50 pounds in the course of the year of diagnosis.

I have also experienced double vision (once) and numb feet (for six months) and vertigo (twice) and have poor balance still today. I walk more slowly, and climb stairs heavily, even though I'm not carrying all that extra weight. All of these symptoms were the same symptoms experienced by my father in his final three decades. I am currently in my early sixties.

Three years in with this treatment, and three to go until I can retire and confidently quit this treatment. Then, c'est la vie.

Wishing you a better outcome. Be strong in what you believe.
__________________
Dx 06/07
Copaxone 07/07
"I can do no great things ... only small things, with great love."
~ Mother Teresa

Last edited by Pens'nChalk; 05-22-2010 at 02:55 PM. Reason: typo, as usual ...

 
Old 05-24-2010, 05:50 AM   #3
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Re: Shaking in my boots!

Quote:
Originally Posted by Pens'nChalk View Post
Hello,
I'm sorry to hear that you feel written off by the doctor. The symptoms you feel are real to you, whether they can be seen externally or not.

I am also guilty of "self-assuming" that I have early Parkinson's. Unfortunately, my MRI's and Lumbar Puncture were not indicative of PD, and say otherwise, they say MS ... I'm now labeled (benign) relapsing remitting multiple sclerosis. I do have the internal tremors upon waking, but also have the external tremors that I saw in my father when he was my age ...I was prepared to have PD ... not prepared to have MS. I know no one with MS. We have a lot of PD in our family's history.

PD didn't disable my dad until his eighties, though he had tremors etc. in his fifties and on. I was okay with believing that it might happen to me, too. He did not have any medication until his seventies, and then it was oral medication. But MS has an undefined, unpredictable prognosis, much more threatening than I might have felt if labeled PD. And it has daily injections for a treatment, designed to cross the blood brain barrier and attract and calm rogue T-cells in my central nervous system. I worry about that, but I comply with that.

While I don't feel written off by my the doctor, I certainly feel disbelieved ... I still think it's Parkinson's to be, despite the MRI images ... but I have accepted the MS prescription - an injection every night, one that burns like acid, one that I have to inject into a different body part every night ... I have to inject into fat, which means I have to look at (carefully) fat every night, to avoid the surface veins ... and I worry that I may be doing more harm than good - I certainly am psychologically, as I resent the med and am disappointed in myself for accepting it. I am now depressed and anxious.

Sorry - this isn't really what you came here to read ... I've been on the MS boards, but don't feel a fit there. So I've been reading quietly here. I've also begun seeing a counselor, and taking depression medication.

Regarding other symptoms, I do have osteoporosis, possible arthritis (muscle aches in upper arms) and take a statin for cholesterol. I used to have daily headaches but during diagnosis I altered my menu, avoid all meat and dairy and fried foods, have no more headaches and lost 50 pounds in the course of the year of diagnosis.

I have also experienced double vision (once) and numb feet (for six months) and vertigo (twice) and have poor balance still today. I walk more slowly, and climb stairs heavily, even though I'm not carrying all that extra weight. All of these symptoms were the same symptoms experienced by my father in his final three decades. I am currently in my early sixties.

Three years in with this treatment, and three to go until I can retire and confidently quit this treatment. Then, c'est la vie.

Wishing you a better outcome. Be strong in what you believe.

I am so sorry to hear about your diagnosis. I often wonder just how correct the doctors are when they pin labels on us. Did you MRI show lesions? I have had four brain MRI's and they are all negative. The neurologist says I do not need a lumbar puncture, which I am beginning to WANT one as crazy as that sounds. I had a horrible weekend of internal tremoring and muscle pain in my thighs. Tried to get outside to get my mind off it and paid for it big time last night. I felt like I was inside a washing machine!!
Anyway, I am SO SORRY for your diagnosis and the hell that you have to go through with all of this stuff. The medicines sound horrific and I sure hope you don't have to stay on them long term.
I wish you well and hope that you recover. I wouldn't wish MS or Parkinson's on ANYONE. They are both horrific diseases that are in desperate need to cures....

God bless

 
Old 05-24-2010, 02:45 PM   #4
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Re: Shaking in my boots!

Thank you ... for understanding my resentment at having an unexpected diagnosis that others seem willingly to seek for years ... yes, there are lesions on my brain and spine, and o-bands in my spinal fluid ... and no, I don't know whether my father shared these unseen signs of MS ... his symptoms and mine are so nearly exact, in time and in place, as they say when seeking MS.

I'm glad that he never had such things as MRIs ... never had a chance to carry this label MS ... never had to face these nightly injections ...

I'm not seeking a diagnosis of PD on top of MS ... but I know that eventually I will be correctly labeled PD, and the MS will just have been an "along the way" label ... I will continue the punishing treatment only until I retire, and will then let nature take its course ... and live the rest of my life without the impending fears that accompany the MS diagnosis. I know it is impossible to expunge the MS diagnosis from my record, but I can at least set it aside once it no longer threatens my family's well being and financial status ... once I safely retire ... then I will live as me again ... not as an MS victim.

This does not make sense to anyone who has not witnessed the long gradual line of PD decline, in contrast to the inescapable fear of the unpredictable drama that MS bears... blind tomorrow? Unable to walk next month? looking just fine while in pain and confused? and I beg pardon of any who feel I ought to be on the MS board instead. Folks who have MS need powerful treatments and therapies that I do not need ... they call my MS "benign" ... hence, the sense of not fitting there. I am betwixt and between beliefs, and feel more at home here, where my dad might have been.
__________________
Dx 06/07
Copaxone 07/07
"I can do no great things ... only small things, with great love."
~ Mother Teresa

 
Old 05-26-2010, 04:50 AM   #5
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Delmar2006 HB User
Angry Re: Shaking in my boots!

I am so sorry about your diagnosis. It really sucks and I can understand your frustration about the "unknown" when it comes to MS. I have a friend who has a VERY rough time with the disease, but on the other hand I have a friend who you wouldn't even know she is sick. She has only had one relapse in 7 years and it was fairly mild and was gone in 4 months. Just like Parkinson's each person's disease is very different and considering your doctors are saying "begnin" that is a good sign I would think.
I heard the medications are HELL and I just wonder how effective they really are. You might try something called the "Swank" diet, which my friend who is doing well with her MS is on. She swears by it, but her doctors think it is a fad. You know what I think, Doctors are the FAD. They know about as much as we do when it comes to health and just when did natural become the alternative? I believe God gave us everything we need on this earth to stay well, but we have turned to toxic drugs to try to solve our problems. I think a lot of those chemicals (especially in foods and the environment) have caused our problems! I wish the FDA would really accept that there are some alternative methods of treating disease that really do work!!
I wish you the best and try to hang in there. I know you are angry and frustrated and I can only say that I completely understand! I don't want a diagnosis of either MS ro Parkinson's, but with the way I have been feeling I just need to know something soon

 
Old 06-29-2010, 12:45 PM   #6
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Re: Shaking in my boots!

Hi Pens. I believe I sent you a message on the multiple sclerosis board. Just wanted to say that theories about MS come and go. Right now the unproven but lucrative (read: makes big bucks for the pharmacetical companies) theory that it's an auto-immune disease is riding high but is being challenged by the theory that it's a disease related to poor venous drainage from the brain (Google Dr Zamboni). Have you been told you have benign MS? Benign and relapsing-remitting are not really the same thing, with benign meaning it has no effect on functioning and r-r having some effect on functioning. I'm sure there could also be such a form of MS that could be termed relapsing-remitting benign, a form that has no effect on functioning but which has symptoms that come and go.

The last time I looked, using an injectable drug for MS wasn't one of the Ten Commandments, haha. As I mentioned in my other message to you, I've had relapsing-remitting MS for 19 years and am doing well. I don't look like I have anything and I don't use, and never have used, any of the injectable drugs. I feel generally well except that my stamina is diminished.

Using an injectable drug is not an inherent feature of having MS. The injectables are the latest craze, and doctors do love their crazes. You are not obliged to use Copaxone if the side effects are making your life a nightmare. Perhaps someone will tell you that you'd be much worse off if you didn't use an injectable drug...but how would they know that?

If the injectables had been on the market when I was first diagnosed, I likely would have gone for one of them, as I wanted to DO something. But they weren't on the market, I continued without them, and have had only one flare-up of note -- and even that was mild -- since I was diagnosed. If I had started on an injectable drug when I was first diagnosed, perhaps someone would be telling me now that I'd better stay on it because otherwise I'd become much sicker, but my personal experience demonstrates that that would not have been correct. It would be the latest 'conventional wisdom' -- amazing how these conventional wisdoms come and go -- but it would be erroneous. Only one flare-up of any note in 19 years could hardly be improved on!

Your message makes me fear that MS treatment is going the way of cancer treatment. What I mean is, as no cure has been found for cancer, it has been demonized in the popular mind and this allows for extreme and dangerous treatments to be used to 'fight' the cancer, the battleground for the 'fight' being the human body.

As you can imagine, since I was diagnosed with MS I've read a lot about how 'modern medicine' functions and it's not a pretty picture. Is MS being presented to you as something so fearful that you must keep on with painful injections? I don't know if it is being presented this way, of course, I'm only wondering. I don't give myself daily injections and life is good. I find it shocking that you have benign MS, or perhaps mild MS, are in late middle age (both reasons to expect a good outcome), and are being given an injectable drug. To me, that's overkill, shooting at mosquitos with a bazooka.

In a decade some other treatment for MS may be 'the only thing', 'the given', 'the must-use'. And the neurologists are susceptible to falling for the latest and developing amnesia about the previous 'only thing'. Understandably, they want something to hang on to.

Sorry to have ranted on, but your suffering disturbs me, as it seems to me to be doctor-induced. Well, perhaps I've got it all wrong so I'll leave you alone now. Looseknit.

 
Old 08-26-2010, 04:08 PM   #7
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Re: Shaking in my boots!

I have had Parkinson's (early onset) since 1999. Internal tremor is my most annoying symptom. The only thing that helps me is 2mg. xanax t.i.d. and mirapex 1mg. t.i.d. Get a good, understanding neurologist. Also, stresss reduction, meditation, proper diet helps most any condition. Unless one experiences internal tremor, they don't know what hell it can be. it's like constant exercise. Feels like your insides are jello in a earthquake. Very annoying. I feel ya. God bless and good luck.

 
Old 08-27-2010, 04:39 AM   #8
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Re: Shaking in my boots!

Quote:
Originally Posted by rc247 View Post
I have had Parkinson's (early onset) since 1999. Internal tremor is my most annoying symptom. The only thing that helps me is 2mg. xanax t.i.d. and mirapex 1mg. t.i.d. Get a good, understanding neurologist. Also, stresss reduction, meditation, proper diet helps most any condition. Unless one experiences internal tremor, they don't know what hell it can be. it's like constant exercise. Feels like your insides are jello in a earthquake. Very annoying. I feel ya. God bless and good luck.
Thansk very much for this reply! I have been battling this feeling for over 6 months now. I went a period of 1 month in between where I didn't have any symptoms and then wham it slapped me in the face again. May I ask what led to your diagnosis of early onset Parkinsons? I have none of the other signs of Parkinsons so my doctor is telling me not to worry, but what I do have is weird stuff like muscle aches, buzzing ears and feeling of fullness in ears, stiff fingers, burning skin and pins and needles sensations that comes and goes. Been tested repeatedly for MS and they cannot find that or any other neurological problem to speak of. I just wonder if they will ever figure it out!
I am mainly curious to see what lef you to the Parkinsons diagnosis.

Thanks!

 
Old 08-27-2010, 04:49 AM   #9
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Delmar2006 HB User
Re: Shaking in my boots!

Quote:
Originally Posted by looseknit View Post
Hi Pens. I believe I sent you a message on the multiple sclerosis board. Just wanted to say that theories about MS come and go. Right now the unproven but lucrative (read: makes big bucks for the pharmacetical companies) theory that it's an auto-immune disease is riding high but is being challenged by the theory that it's a disease related to poor venous drainage from the brain (Google Dr Zamboni). Have you been told you have benign MS? Benign and relapsing-remitting are not really the same thing, with benign meaning it has no effect on functioning and r-r having some effect on functioning. I'm sure there could also be such a form of MS that could be termed relapsing-remitting benign, a form that has no effect on functioning but which has symptoms that come and go.

The last time I looked, using an injectable drug for MS wasn't one of the Ten Commandments, haha. As I mentioned in my other message to you, I've had relapsing-remitting MS for 19 years and am doing well. I don't look like I have anything and I don't use, and never have used, any of the injectable drugs. I feel generally well except that my stamina is diminished.

Using an injectable drug is not an inherent feature of having MS. The injectables are the latest craze, and doctors do love their crazes. You are not obliged to use Copaxone if the side effects are making your life a nightmare. Perhaps someone will tell you that you'd be much worse off if you didn't use an injectable drug...but how would they know that?

If the injectables had been on the market when I was first diagnosed, I likely would have gone for one of them, as I wanted to DO something. But they weren't on the market, I continued without them, and have had only one flare-up of note -- and even that was mild -- since I was diagnosed. If I had started on an injectable drug when I was first diagnosed, perhaps someone would be telling me now that I'd better stay on it because otherwise I'd become much sicker, but my personal experience demonstrates that that would not have been correct. It would be the latest 'conventional wisdom' -- amazing how these conventional wisdoms come and go -- but it would be erroneous. Only one flare-up of any note in 19 years could hardly be improved on!

Your message makes me fear that MS treatment is going the way of cancer treatment. What I mean is, as no cure has been found for cancer, it has been demonized in the popular mind and this allows for extreme and dangerous treatments to be used to 'fight' the cancer, the battleground for the 'fight' being the human body.

As you can imagine, since I was diagnosed with MS I've read a lot about how 'modern medicine' functions and it's not a pretty picture. Is MS being presented to you as something so fearful that you must keep on with painful injections? I don't know if it is being presented this way, of course, I'm only wondering. I don't give myself daily injections and life is good. I find it shocking that you have benign MS, or perhaps mild MS, are in late middle age (both reasons to expect a good outcome), and are being given an injectable drug. To me, that's overkill, shooting at mosquitos with a bazooka.

In a decade some other treatment for MS may be 'the only thing', 'the given', 'the must-use'. And the neurologists are susceptible to falling for the latest and developing amnesia about the previous 'only thing'. Understandably, they want something to hang on to.

Sorry to have ranted on, but your suffering disturbs me, as it seems to me to be doctor-induced. Well, perhaps I've got it all wrong so I'll leave you alone now. Looseknit.
I love thist post! I feel the exact same way about the way the medical community handle most diseases. They throw a bomb in the garage to kill the mouse. It is ridiculous and from personal experience (losing 4 people to cancer treatments - NOT the cancer) is proof that the way we treat most diseases in this country is not working. The only reason these treatments are being pushed down our throats is because the pharma companies are training the doctors...not the medical schools anymore. Need to get an erection....take a pill, need to have tears....take a pill, need fuller eyelashes....take a pill. Oh, don't worry about your liver...you really didn't need that anyway! It is ridiculous. Ok, now I am done venting. What I would like to see is more ACCURATE diagnosis for patients and treatments that think outside the box!

 
Old 09-05-2010, 06:05 PM   #10
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Re: Shaking in my boots!

Hi Delmar, Looseknit and all,

Just checking back in with you ... the summer is ending, I'm back in the classroom with a great group of students despite the heat this opening week.

I have made contact with the PD Risk study group at NIH in Bethesda, and have been accepted as a participant, due to my family history and some symptoms common to PD. i am very excited about this connection ... the study will monitor me and report to my doctors over the next seven years, and their focus will be on Pd-related symptoms ...rather than MS.

I am optimistic that this will lead to the correct diagnosis of PD; no idea whether it will erase the diagnosis of MS, but pretty sure it will end the MS injections that are designed to slow relapses (which I don't seem to have.)

It's an honor to me to participate in a study that will help people have accurate diagnoses of Parkinson's Disease earlier ... and so begun the correct medication that will slow the loss of dopamine and so slow the deterioration. Even if it is too late to limit my disease, it will help my children and grandchildren's generations.

As for me - they have found scoliosis (at age 60!) and osteoporosis, and possible arthritis, as well as resting tremor, imbalance, etc. The back and neck pain are likely caused by the scoliosis (which was never mentioned before, and so may be a new development.)

I suspect that I will be using a walker by mid-year ... this week was very tough ... much more sitting than I've ever done before in the classroom ... avoiding stairs as much as possible ... nervous in the busy corridor and walking slowly in a very fast moving group. The walker may help with that.

If I'm allowed, I'll keep you posted on the testing and study ... wish me luck?
__________________
Dx 06/07
Copaxone 07/07
"I can do no great things ... only small things, with great love."
~ Mother Teresa

 
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