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#1 Smokymount

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Posted 12 June 2014 - 07:57 AM

Hi Everyone!  Last week I was diagnosed with PD.  I have a long history of severe Osteoarthritis plus stenosis of my neck and my back.  I have been a patient of UT Medical Center for the past 7 years.  I've had a Total Hip Replacement and a Basal Joint Replacement due to the degenerative arthritis.  Have had severe nerve ending problems and have a TENS unit to wear.

 

I've been stumbling, falling (can't fall due to breaking artificial hip) and sometimes can't think of a word (when I actually know the word, but can't get it out).  My nerve endings have caused tingling down my right arm to my fingertips when held in a certain position (typing and driving).  My doctor was concerned and wanted me to visit a Neurologist.  UT had no openings until January, so they scheduled an appointment on the community immediately.

 

I went to see this Neurologist last Thursday.  He had me walk, get up and down from a chair, sit on the table to check my reflexes, gave me a computerized test (which I maxed), and administered another test with electrodes plastered to my head.  I maxed that test of sounds also.  Came back into the room and said I was in the beginning stages of PD.  SERIOUSLY???  He gave me a prescription of Carbidopa-Levodopa 25-100 for twice a day.  He told me that I would feel much better by the time I see him again.  Additionally he is scheduling me for 2 MRI's.  One for my brain and one for my neck. 

 

So my real question is: Is this the normal exam process for PD?  I can't believe that he could determine PD with the few things that was done at the appointment.  Again, I must be in denial.  I don't feel any different than I did before the exam.  With or without the meds.  If the diagnosis is accurate, then I am sitting here wondering how long would it be before I got a tremor, etc. 

 

Thanks for listening and I am so happy that I found this group!!


Edited by Smokymount, 12 June 2014 - 07:58 AM.


#2 lu states

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Posted 12 June 2014 - 09:45 AM

for me, i was sent by my regular dr., but i already knew.      i had had symptoms for 10 years, gradually changing and getting worse.  i finally was fired ( i was a waiter and couldn't do my job anymore.  i was shaking so much, and had been, but worse every year. i started thinking at work " am i stumbling ? ", then: " am i stuttering at the table "  ), evicted ( a granny needed my granny ), and the whole spring was a nightmare.     reading your symptoms, i thought how jacked our bodies get.....so many get the same things, so many others.   my neuro tested me  cognitively, and then i walked, he had me do little finger things, snapped my wrist ( which " catch " )  etc. , then told me i had it.   i was relieved actually.   they SEE things we don't, and recognize them.  i didn't know my arms didn't swing.  i hadn't noticed my tiny steps until i saw a video of me walking.  the thing is, i didn't take sinemet, he had me on mirapex, which i was already taking for RLS.   i fell all the time. ran into things.  was so tremulous.   when i saw him in january, he put me on sinemet.  after a crappy month of side effects, i stopped weaving, falling, shaking, etc.   except for exhaustion and cognitive problems, i walk better, swing my arms more, my facial expression is more animated.   give the sinemet time.    i expected nothing, and couldn't believe the change over time.  i now paint to help me survive, and couldn't if i still shook.   that is all sinemets help.   if you have P.D., the sinemet will stave off the tremors....maybe.  what do i know ?   for me, they took a terrible one i had for 10 years, and now i barely shake.   just " bad "  days.  there are always bad days, but not having so many outward physical symptoms has been helpful.     good luck to you.....give the sinemet a chance....maybe it will help you....   it helped me.    they also use it as a diagnostic tool, by the way, so.......     best, lu



#3 TNdad

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Posted 12 June 2014 - 10:36 AM

Smokymount,

We must live in the same area...Did you see a movement disorders specialist or a general neurologist?  Just wondering.  I hope you find some relief from your symptoms.  Maybe I'll see you at the PD support group at UT medical center.   Ask your neurologists office about it.



#4 old+slow

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Posted 12 June 2014 - 12:24 PM

I had pretty much all the same test, but like lu states I already pretty much knew what it was and was not at all shocked when I got the news. I was also started on Sinemet and within a few weeks my symptoms had become very minimal. More so in that it my tremors had almost stopped and walking and speach improved greatly. This confirmed to my neuro that indeed it was PD

 

4 months later I got another opinion with the same results . Not saying the Sinemet is a cure all, but it def helps me get through day to day much eaiser with minimal to no tremors.

 

I'm guessing that the MRI is to rule out something else?  I don't think it helps in detecting PD as far as I know.


So what were we talking about?


#5 Beau's Mom

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Posted 12 June 2014 - 02:17 PM

I, too, had the same tests by a standard neurologist, but I had no idea that I'd had YOPD for nearly 30 years already. I discovered that after reviewing the warning signs. Eventually I saw a Movement Disorders Specialist who ordered a DAT Scan. Of course, by then I didn't really need one for diagnosis, because I'd been seen by two other MDS's who confirmed my diagnosis on exam. The DAT showed minimal uptake of dopamine on both sides of the brain, which fit my symptoms in an off state quite well. In an off state, there is very little I can do on my own. The Sinemet every two hours while awake keeps me talking and moving without too much pain. I was diagnosed originally in late 2010 at the age of 57. At that time I took Sinemet 25/100 3x/day. I am now 61 and take Sinemet 25/100 every two hours from 7:30 AM to 9:30 PM, plus one extended release during the night. 

 

I am allergic to all agonists and am not a candidate for DBS. I am holding out for FDA approval of the Duodopa Intestinal Gel pump, which delivers levodopa 24/7 with no off periods. Sounds like heaven to me!

 

Dianne


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#6 Smokymount

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Posted 12 June 2014 - 10:14 PM

Thanks everyone for the information! I will ask the Neuro why I am taking this medication if I don't have any tremors or if it is to hold off the tremors. It appears that those of you who answered already had the tremors when you were diagnosed. This tremor part is what I am wondering about. I guess I expect to know when the tremors will start. Or are there people out there who have PD with no tremors? So many questions. I will ask the Neuro when I see him next month. I will see the Nuero Movement Disorders Specialist in January at UT. In the meantime I will go to the General Neuro and see what happens. The MRI for the brain is to rule out anything else..like a tumor. The MRI on my neck is to find out how much damage I have to my spinal chord due to the arthritis. TN DaD..I live in the foothills of the Smokies between Newport and Gatlinburg. Didn't know about the support group at UT. Thanks for telling me about it!! Thanks to all of you and I will keep you posted! :)

#7 she-ra

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Posted 13 June 2014 - 06:55 AM

I had the same experience, walked around the room, did the finger touching the thumb thing, ten minutes later I had PD!  No resting tremor, just a stiff shoulder and crappy handwriting.  I was absolutely dumbfounded, had no idea that was coming.  I took the sinemet for a year and a half and stopped.  I struggle with whether or not to restart since I manage okay with out it.  I guess there will come the day when it becomes obvious that I need it. 


Sheila ^_^

 

Current age= 61

Symptom Onset- 2009 (56)

 

Current meds:Sinemet 3X/day (25/100) 


#8 old+slow

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Posted 13 June 2014 - 04:32 PM

Everyone with PD is slightly different and no two of us are exactlly the same. Sometimes if the doctor is not 100% sure, they will try you on Sinemet or something similar as a test to see if you show any inprovment. Unfortunately testing for PD is very limited, and this is one way to tell. Even a DAT scan is not 100% in testing. If over a period of time you show major inprovment, this is one way they can confirm.

 

How long have you been taking the Sinemet?


So what were we talking about?


#9 McCall

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Posted 14 June 2014 - 03:51 PM

Please keep in mind that many people with Parkinsons never develope tremor, there are MANY symptoms and you may or may not have them all or any particular one.



#10 gotime

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Posted 23 June 2014 - 01:24 PM

i was recently diagnosed with Parkinson's last week after having symptoms for almost a year. The only thing my neurologist did was give me a prescription for Azilect and see you in 3 months. Nothing else! I've been doing my own research on the internet, but was curious to hear some feedback from some others in my position. Any info would be greatly appreciated.



#11 Cindy L

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Posted 23 June 2014 - 02:37 PM

I also have degenerative disk disease in my neck and had an anterior cervical discectomy with fusion 2 1/2 years ago.  The numbness and tingling I was having constantly in my left arm went away for the most part in about a week.  I was fine for almost a year and started back with the same pain in my left arm and have had numerous x-rays, MRIs, CAT scans and EMG tests to rule out MS, brain tumors, a stroke, and carpal tunnel.  I have none of those.  My rehab doctor is the one who finally started putting it all together after I mentioned to him that my left arm did not move when I walked.  I have balance issues, occasional tingling in my fingers and left arm pain.  My left sided weakness continues to get worse.  I do not have any tremors but have 3 of the 4 cardinal signs for PD.  I was shocked when my doctor told me what he was sure I had and that he had been thinking for awhile that I had it. When I told him I  thought he had pulled that diagnosis out the air, he asked me why I thought that.  I said I don't look like what you imagine a PD patient to look like. I don't mean any disrespect to anyone in this group when I say that.  I had an imagine in my mind and that is not what I thought I looked like.  I have to admit though. someone took a picture of me walking my dog and I said to my husband, I do have PD.  Look at my posture and how I am walking.  I am presently not on any medication and go back to my neurologist and physiatrist in Sept.  I just joined this group and I must say everyone has been so helpful.


Cindy

Age 60 for one more month

Officially dx Sept. 18, 2014

Have had symptoms for at least 7 1/2 years

Starting on Sinemet 25/100 1/2 tablet 3X daily for 2 weeks then 1 tablet 3X daily





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