Christine,
This may sound strange, but hang on to that doctor. There are several other diseases, degenerative neurological ones which look exactly like pd until they progress far enough so they take on a set of symptoms uniquely their own. the pd plus category of diseases is one group that falls into this category.
These diseases have no cure, like pd; also like pd there is no test to determine the presence of the disease except post mordum look at the brain. Unlike pd, most people with these diseases don't respond well to pd meds. approximately 25% of patients with pd plus react at all to pd meds. these are the lucky ones. in fact one of the signs of not being pd is not responding to anti-parkinson's drugs, especially sinemet.
each of the diseases have a unique prognosis, quite frankly making pd look not so bad. So, i know it's hard, but be patient. A modified pd diagnosis does not make a doctor's day.
I was diagnosed with pd in 1997. I saw specialists at georgetown and john hopkins. the doctor at georgetown mentioned parkinson's plus but didn't indicate which flavor; the john hopkin's specialist was convinced that i had idiopathic pd - a severe and aggressive case, but idiopathic parkinson's. in june of this year, i went to the cleveland clinic to see if i was a good candidate for stn/dbs surgery. My balance had gotten so bad, i felt that this surgery was my only chance for a semi good quality of life. i saw dr. montgomery, a wonderful, compassionate, caring man. The kind of doctor who gains your trust immediately with his gentle soft spoken honesty. After being with me for about a half to three quarters of an hour (i had seen several other doctors throughout the day), he told me he would like me to stay for some more tests and to see another doctor, an ent specialist. there was some stuff about my symptoms he didn't
like and he suspected that i didn't have pd, but msa, multiple systems atrophy, specifically the shy-drager variety. i had been living with this disease for three years, so it didn't matter much to me what it was called until the other shoe fell. i was not a good candidate for dbs surgery. it seems that people with msa do not respond well to surgery was discovered after they had surgery because they were believed to be pd patients AND it wasn't until their death and an autopsy performed that the diagnosis was changed. one of the tests he wanted to have was a new cat scan. if they found lead in the brain, it would confirm the msa diagnosis. all these confirmation test for these types of diseases, dr. montgomery explained to us, worked the same way. a positive indicates you have the disease; a a negative does not confirm that you do not. When my cat scan came back minus lead, dr. montgomery did not change his diagnosis. He said
that although every symptom i had can occur in idiopathic pd, the particular set of symptoms i had clearly indicated clinically that what i had was msa. he was 99.9% sure of his diagnosis. As i have mentioned his manner gains your trust and when he said 'how many times have you heard a doctor have that much confidence in his diagnosis, i believed him.
i had other problems to deal with by that time. complications of msa. the reason he wanted me to stay at the clinic was he didn't like the look of my throat, specifically my vocal cords. the ent specialist, dr. eliachar confirmed in no uncertain terms. He wanted me admitted to a icu unit immediately where i could be watched continuously until i could be operated on in the morning. and if icu was full, which is was, i was to spend the night in the normal neurological unit. my word, talk about being scared to death. this man was convinced my life was in meat danger. who was this guy, anywise. i left his office agreeing to nothing except that i wanted to talk to my husband before i agreed to anything. i got the distinct impression that dr. eliachar was rather annoyed with me. when i got back to my room, dr. montgomery had admitted me the night before, presumably because i was to be tested early in the morning, dr. montgomery
was waiting for me. "Is this absolutely necessary?" was the first thing out of my mouth. to which he rather sadly shook his head and said, "Yes, i'm afraid so." what was happening to me? how could this trip i had put so much hope in turn into such a nightmare. I was being operated on, but hardly the one i had hoped for. the msa had been doing it's damage not only to the muscles in my mouth making my speech difficult to understand and chewing my food difficult, the msa had gone to work on my vocal chords which had become so rigid they were not opening enough when i inhaled to let enough air into my lungs. what the doctor's were afraid might happen at any moment was that my vocal chords would suddenly seize up completely and i would suffocate to death. I didn't leave cleveland like part of me wanted to, but hung around so they could perform a tracheotomy. I knew right after surgery that i had made the right decision - no
doubt about it. I greeted my husband with a smile while trying to convey to him that my hands and feet were warm for the first time in months. these doctors literally saved my life. my warm feet told me so. the trach they put in is vennestrated, meaning it has an opening at the top of it so air can get up through my vocal chords and i can still speak. just three months after this was done, i'm losing my speech again, because my chords are too rigid to vibrate sometimes.
yea, they were right. i left the clinic three weeks after i had "dropped by" for an evaluation. in one sense the trip was a disaster. but i went there looking for a better quality of life. during most of the three weeks i recovered from surgery, i was put in a uncritical care unit (rehab) where i got my fill of physical and occupational therapy, and the doctor's had time to do a drug study with the assistance of a physical therapist who saw and tested me every hour (I'M IN the lucky 25% group that does get some relief of symptoms from antiparkinson's meds) , and i learned to accept my new trach before having to face my daughters and friends. i left cleveland with what i had gone for a better quality of life. not in the manner i expected. but--
and it's a big but- - i know what i have, not pd explains a lot. my life expectancy got a lot shorter with the letters msa, but i'd rather know that now. Makes each day a treasure....as painful as it is. in all honesty, the doctors at the cleveland clinic didn't surprise me totally with the changed diagnosis. like i said it explained a lot.
be patient , Christine, hope for the best. but above all, an accurate diagnosis is well worth the uncertainty and the time and aggravation of all the tests . i hope when they are finally ready to offer a diagnosis, whatever that may be, you'll know in your heart that if you are totally honest with yourself, they are right.
i did and it made a big difference.
god speed,
cathy
{1st symptom 1995, dia.pd 1997, age now 52).
Christine wrote:
> Well, I am really confused. I just saw a new movement disorder specialist today and she isn't sure I have PD. I was diagnosed in 99 with Essential Tremor. Then in May 2001 I was diagnosed with PD due to tremor, balance problems, no swing in my arms, rigidity. So I was put on Amantadine. I needed to follow up with this doctor since I am having sleep problems caused by restless leg on the same side as my arm tremor. She said she doesn't want to label my problem yet. I guess I don't have the "typical" hand tremor and my shortened gate shuffled is not the same as PD, and the rigidity in my legs are not quite like PD??? Ok, now she isn't sure so she is going to treat me with Requip to see if that helps my restless leg syndrome. The indecisiveness is really bugging me. If it isn't PD, what is it? Basically, seems like she wants to medicate me to control the symptoms and see over time what it turns into....wait and see game.
>
> Has anyone in this group every gone through this? I am really bummed. Not that I want PD, but I am in limbo now.
> Christine
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