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mscrowbar
Veteran Member


Date Joined Nov 2010
Total Posts : 877
   Posted 10/18/2011 9:36 AM (GMT -7)   
I know that this site is not very active but do hope I may get an answer.
 
Slowly over the past several years I have noticed that my sense of smell has diminished. I can only smell really strong odors or sudden ones. I did ask a neurologist about this and he seems stumped. I went to him complaining of muscle cramping, twitching, and balance issues. These are come and go issues and at the time of physical they were not present. He saw nothing wrong! I have since been diagnosed with RA.
 
But, RA is not responsible for the lack of smell and for the tremors I am now getting in my right thumb. I also get tremors on the bottom of my right foot and have range of motion issues with my left shoulder and left hip.
 
I am just wondering why the lack of smell and other type PD symptoms didn't ring any type of bells with the neuro??
 
I do have an appointment with my rheumy the end of November and plan on showing him the right thumb tremor and explain some of my "new" symptoms to him. (I cannot walk up a flight of stairs with anything in my arms or I lose my balance, My left foot only comes up a few inches from the floor so its hard to get it up on the step or raise it to put pants on, I have a nerve twitching almost constantly under my right eye, and my vision seems to be getting worse by the day!)
 
I and the doctors will eventually work this out, but I just question the lack of smell issue. The neuro just seemed totally perplexed about it. Was it because I lacked enough of the "other" symptoms or because he isn't tuned into the possibility of PD?
 
Any response would be helpful. Thanks

yekkimo
Forum Moderator


Date Joined Apr 2003
Total Posts : 1280
   Posted 10/18/2011 6:43 PM (GMT -7)   
You need to see a movement disorder specialist.This is a neurologist with specialized training in recognizing diseases such as pd.Let us know how you make out.Wish you the best.Ed
Ed-Moderator Parkinson's disease forum.
Diagnosed with Parkinson's Disease in 1998.As long as I can fish life is good.Keep a great attitude.It benefits all.Meds:Stalevo,Mirapex



support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.

alex1
Regular Member


Date Joined May 2008
Total Posts : 27
   Posted 10/19/2011 1:25 PM (GMT -7)   
I lost virtually all my sense of smell considerably before the diagnosable "symptoms" of Parkinson's were evident. Also, while there is never any standard in Parkinson's, it usually hits only one side in the beginning. Ed's absolutely right about a movement disorder doc-just ask how many PD patients he has before you hire him. If it's not a lot, go to the next name

mscrowbar
Veteran Member


Date Joined Nov 2010
Total Posts : 877
   Posted 10/19/2011 2:20 PM (GMT -7)   
I have never been very good at stepping on others toes, so to speak. So, I ask? should I bring these up to the rheumy and get his take on it? should I return to the neuro and discuss with him these new symptoms? or do I just pick out a name for an mds and go right over their heads?
The symptoms right now are fairly mild and most are not visible. I don't know if I should wait till they become more obvious? I don't want to be dismissed because my symptoms are not severe enough to say " I see nothing" come back in 6 months......I guess what you are saying is that a mds would know what these symptoms are even if they are just beginning or are fairly mild?

The tremors on my right sole are not visible, the right thumb only spasms when I am trying to type (at rest on the space bar), and the balance on stairs problem is something they can be told but not witness. will these symptoms become more evident? should I wait a few months? Could it be something else? (the tremors are on the right side but the range of motion issues are on the left - could one actually be RA and the other possibly PD?)

Thank you for your responses and time. I love healing well and visit just about everyday. Everyone is patient and understanding. Something most of us do not get in our home or work environment.
Denita
**************************************
Rheumatoid arthritis with secondary Sjogrens, Fibromyalgia, meniscus tears in left knee, Cancer survivor

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1476
   Posted 10/23/2011 7:20 PM (GMT -7)   
Denita
Stepping on toes???? You owe them nothing. This is your health. You call the shots. I lost my sense of smell in the mid 1970's. No idea it was the first symptom of PD. In 2007 I had a colectomy/ileostomy due to ulcerative colitis. Surgery went bad and I developed peritonitis. A few months later I developed tremors. Went to a general neuro (I didn't know better). He diagnosed PD and prescribed Sinemet. Did some research and found that Sinemet is not always the place to start due to long range side effects. Azilect does not have the side effects and has been shown to slow the progression of PD. He refused to change script saying that....ready for this?.....AZILECT IS TOO EXPENSIVE! It is expensive, about $9.50 a pill retail. One a day. It's my decision, not his. I am worth it. Went to a Movement Disorder Specialist. He agreed Sinemet was not the right start and agreed with Azilect. I also take one Artane a day to stop the tremors. I have not increased the dosages of either. I am doing fine.
 
Don't wait!! Go to a MDS as soon as you can, if not sooner!!
 
Keep us posted on what you do.
 
Dan
 

mscrowbar
Veteran Member


Date Joined Nov 2010
Total Posts : 877
   Posted 10/24/2011 1:53 PM (GMT -7)   
thank you so much for the "push" to do the right thing in taking care of myself. you are right. will be back as soon as I get some answers.

take care

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1476
   Posted 10/25/2011 6:07 PM (GMT -7)   
mscrobar
Keep us posted

Dan
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