I was having problems with tremors and walking and no arm swinging among other problems, I went to my family doctor and he did a test for lyme disease and it came back negative so he sent me for an Mri it came back that I had Chiari malformation so I had brain surgery in June. I went back to my neurosurgeon for a follow up and he noticed my left arm shaking and said it was not related to the Chiari and said I should see a neurologist. I went to the neurologist a couple of days later and was diagnosed with parkinsons. I live about 3 hours away from the neurologist that diagnosed me so he said find one closer to home so I didn't have to travel so far. I went to the new neurologist and he told me I don't have Parkinson's . He was very rude and said if the carbidopa levodopa was helping keep taking it. What I don't understand is if the meds are for Parkinson's why should I keep taking it? I have felt better when taking the meds my tremors have calmed down and my walking has gotten a little better but I know when it is wearing off because I can feel myself shaking inside. So now it is back to Pittsburg to get another opinion. Has anyone else gone thru all of this frustration? I forgot t o mention I thought if the meds are working I wouldn't show too many symptoms when I saw the second doctor. Also does Parkinson's show up on an MRI. I was told he reviewed my brain scans and said he saw no evidence of the disease. Sorry for rambling I keep thinking of things as I type, I also would like to ask if anyone has problems with loss of smell I have problems where sometimes I smell ammonia real strong and no one else can and then there are time I can't smell anything.
Posted 15 November 2013 - 10:08 PM
Edited by Rogerstar1, 15 November 2013 - 10:09 PM.
Posted 15 November 2013 - 10:18 PM
Welcome to the forum Mike. Unfortunately, I think you've already discovered one of the "joys" of having a serious disease - DEALING WITH A LOT OF INCOMPETENT, IDIOT DOCTORS! I could write a book just about the incompetent doctors I've seen in the past 6 months related to my kidney stones! Unlike someone else I know, I at least survived my kidney stone ordeal largely intact!
Unfortunately, your story is very familiar to many of us, with many different doctors giving many different (and often conflicting and often ridiculous) opinions on our symptoms. In my opinion is it absolutely inexcusable that a doctor (who you are employing) would be rude. I would FIRE HIM and find one that wants to work FOR YOU!
As for your question about smell, I normally can't smell anything.
Posted 15 November 2013 - 10:32 PM
I am very very new here too, so I don't have too much to offer, But I sure can relate to that little journey you have had with doctors.
(Been trying to get my father help, he was dx with PD about 3-4 weeks ago)
I am still overwhelmed, but one thing I have learned is the care from
a Center of Excellence seems to solve a lot of issues of wasted appointments with un-informed doctors,
Here is a list of where those are - there is one in PA.
Wishing you the very best !
Ah geez they took my newbie status from me, I am NOT ready to give that up ! Here I just told you MIke I am very very new here, well I am and I certainly am not an advanced member... I will have to put a disclaimer on all my posts !
Edited by Rebecca2z, 15 November 2013 - 11:04 PM.
Posted 15 November 2013 - 10:51 PM
Two points I need to make here, well maybe more...
PD does NOT show on an MRI, any neurologist who says you don't have it because there is no evidence on the MRI. My normal MRI ruled out stroke, tumor, or anerysm and helped confirm the PD Dx.
Doctors are expensive, and you need to you need to be able trust they are listening to you. Therefore under no circumstance should go to a doctor who is rude to you.
I read on here recently a very true statement. Med schools graduate students at the bottom of the class too, and yes even those graduates go on to be doctors.
I don't know if you have PD or not, but I know you should get another opinion from a doctor isn't rude to you and knows more about the illness you've already been Dxd with.
Posted 15 November 2013 - 11:06 PM
"Med schools graduate students at the bottom of the class too, and yes even those graduates go on to be doctors."
Boy is that ever a good point Richard !
Posted 15 November 2013 - 11:44 PM
PatriotM I basically did fire him I told him to kiss my *ss in a round about way ..When dealing with my chiari I went through five drs until I got some answers. He told me I could not have chiari and Parkinson's at the same time. I appreciate everyone's response I 'm sure I'll have a million more questions. I was wondering if any one else has tremors when they get cold ? I noticed my left side shakes when I am cold.
Posted 16 November 2013 - 12:44 AM
yes sir my temors do get worse, or should i say more visible.
Posted 16 November 2013 - 06:20 AM
PatriotM I basically did fire him I told him to kiss my *ss in a round about way ..When dealing with my chiari I went through five drs until I got some answers. He told me I could not have chiari and Parkinson's at the same time.
Good for you!!! The last thing those of us with a serious illness need is a doctor that is rude or a doctor that isn't working for us.
Posted 22 November 2013 - 09:13 PM
Mike- My journey started out just like yours. In 2000 I was diagnosed with a Chiari I Malformation. In 2005 I underwent back to back brain surgeries and was decompressed twice after I started to become neurologic. My thumb on my left hand was twitching and at times I would become PHYSICALLY (not emotionally or psycologically) depressed- it felt like a serious increase in CSF pressure and hypoglycemia- it was neither. About 6 months after the pressure on the brain was relieved, I started having symptoms again including swallowing issues. I saw doctor after doctor and no one knew what was wrong- at 36 years old they just don't think PD- and I even went to the Mayo Clinic in Jacksonville and they missed it. Finally last year after my left arm stopped swinging and started tremoring, my sleep pattern changed drastically and I started experiencing anxiety ( something I had never experienced before not even before the 2 brain surgeries) I went back to my neurologist and updated him on my symptoms. Even then he only sent me to Shands Parkinson's and Movement Disorder Clinic ( 2.5 hrs away) to rule it out. Imagine my surprise ( and horror) when after 45 minutes of neurologic tests I had done dozens of times before, my doctor blurted out "you have PD". And no it does not show up on any CT's or MRI's- I have a closet full of those. I got a second opinion from a PD specialst from Mayo Clinic ( ironic I know ) and they had no problem confirming it was indeed YOPD- early stage- even though I have had symptoms for at least 10 years. Did I feel better knowing- not even close- I cried for 2 days. Then I got mad and came out fighting. As for the neurologist who can/can't see PD on your scans- GET A NEW NEUROLOGIST, please! As a scientist myself I can attest that not all doctors know all things about their field- movement disorders are a specialty not all neurologists are experienced in. As for smell I still have mine, but many PWP lose it early on. PD is called a designer disease ( sounds so fancy doesn't it) because it is different for everyone. Getting diagnosed sucks but getting jerked around by numerous doctors sucks worse. At lease knowing allows you to start dealing with it. Best of luck from a fellow zipper-head! (please forgive any typos- my brain works faster than my left hand)
Posted 22 November 2013 - 09:48 PM
My original neurologist correctly diagnosed me, but had never heard the term Movement Disorders Specialist and was so surprised that he asked me to bring him back more information about what they do after my visit. Couldn't even be bothered to look it up himself!
Edited by Beau's Mom, 22 November 2013 - 09:49 PM.
I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.
Posted 23 November 2013 - 09:57 PM
Annikin,it is nice to hear from a fellow zipperhead.I went back to Pittsburgh to see a neurologist and was told I don't have Parkinson's ,but my family doctor thinks it is. He said what does he know he is only a lowly dr. He said it sarcastically .So now I go for an eeg to make sure it is not seizure related. I'm just tired of feeling like crap. By the way the doctor in Pittsburgh only has 4 years experience as I found out after my appt.
Posted 27 November 2013 - 09:06 PM
Hi Mike- If you can, find a movement disorder specialist- a neurologist with the extra training to diagnose PD. My first visit to the Mayo Clinic a little less than 2 years ago, they too said it was not PD- one year later they confirmed it was. Things change and what may not be definitive now, maybe more easily detected in a few months. From the bottom of my heart I hope they are right and you do not have YOPD. The ACM1 is bad enough- even if you get to sport this cool scar!
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