The last 6+ mos. or so I have been experiencing little to no right arm swing, lousy small writing and trembling in the right arm. Lately the trembling has subsided quit a bit but the arm swing is still non-existant. Does this disease come and go in the early stages? I feel more in my mind there is a pinched nerve but the doc says that wouldn't account for the arm swing issue. Any thoughts?
Much of what you are writing are typical symptoms of PD. My case started with lack of arm swing but I was also diagnosed with Cervical stenosis (basically a constriction in the spinal cord). You should probably see a neurologist who will probably send you for MRI(s) to rule out causes other than PD and/or give you a trial of requip, mirapax or sinemet to see if you symptoms improve. I don't check here all the time but I'll try to look for updates from you. Good luck -it's incredibly scarey to basically know there is no "cure" only symptom management. In my case it's been 4 years and I really haven't gotten worse, just frustrating that while many things (like the small handwriting) got better after surgery, I know that I'll never walk properly again.
I just turned 50 so its especially frustrating - just when I have an empty nest, etc.
Sunshine, thanks for the reply. I TOTALLY understand about hitting 50 and how things change, it did for me. I'm 60 now (when did that sneak up?) planning to do a lot of things.
I saw a neurologist yesterday and he told me he doesn't think it's PD or else it's one he's never seen before! I thought my symptoms were classic but he thinks I might have a blood clot or benign tumor so I'm getting scheduled for a MRI. That threw me for a diagnosis! I didn't have the tremors for him to see so maybe that was a deciding factor. Filling out the medical history form for the doctor should have gotten his attention as it (writing) looks terrible/small. So we'll see where it goes. At the moment we're waiting for insurance authorization for the MRI.
I'm glad to hear your symptoms seem to be holding status quo; is it due to meds you are taking? I read the progression of PD and it is scary like you said, especially when we, like you, are empty nester's wanting to travel or pursue hobbies. Seems getting older isn't friendly
Good luck with the MRI, give a post here with the results.
I'm taking very low doses of Requip -1mg/3x per day and Azilect .5mg/1x per day - both are below "guidelines" - the Requip appeared to make a difference immediately but the Azilect is more "subtle" so I don't really know. I hardly miss a dose so I don't knw for sure if its making a difference in the long term. I've thought about stopping them and see what happens - my next specialist appointment is in April and I plan to ask him if we "can experiement"
Hi Sunshine, I'm glad to hear the low doses of medications are helping with your symptoms. I can sure agree with your desire to experiment as why take additional meds if just one would help. I sure hope the specialist you see in April agrees to try different therapies.
Once I get the MRI clearance, then the appt. for the scan and then the follow-up appt., I'll post here with the results. I'm not anticipating any findings from the scan but I guess it has to be ruled out. I seem to get pain in the shoulders, do you? They have looked at impingement but don't think that's the cause nor do they feel it would keep the arm from swinging. Drives me nuts!
Well I saw the neurologist after the MRI and all is well. He was actually surprised there wasn't a tumor or blood clot, so now he's looking more actively at PD. I'm on a trial of Sinemet 3X day to see if things improve so we'll see. It scares the bajeezus out of me after reading the progression of PD as time goes by. What's scary is the weakness after very little arm use, and the dexterity of the affected arm is deterioating it seems. Do you have sluggish finger dexterity? Thanks.
Inspector, I didn't notice before that you were on Sinemet.
What has been your experience since taking it?
Overall, when reading the board I see that many people have sluggishness in a leg/foot or an arm. One big improvement with Sinemet for my husband is being able to use and move his right arm with much more ease. It's not such an effort to fill out forms and write as it used to be before he started. He has entire right-side weakness, but he didn't notice it until the doctors said so.
Please let us know how the Sinemet works for you. Also, did you try discontinuing it for a day or two out of curiosity as to how effective it might or might not be?
I did a real short trial of the Sinemet but my symptoms are so mild most of the time it was difficult to determine a defined benefit. My writing looks as if I was training to write prescriptions! I'm sure glad to hear the medicine is helping your husband as quality of life is important.
I see the neurologist the 19th for results of the EEG but I don't expect any earth shattering news. I figure my next move is the Movement Disorder Specialist.
Sorry - I haven't been reading the boards much lately. What did the neuro say? I am so confused about whether my problems are PD or from the stenosis. Even my movement disorder specialist isn't 100% sure. I see him again late April (at this point it's been every six months). Where do you live (approximately)? The doc I see is in Rochester NY and is part of a teaching hospital but it's a 2 hour drive for me and I have a local neuro to call when I need quick advice. But... I think if I saw her all the time I'd be on higher medicine doses because she says that in particular my Azilect is below "guidelines". So I think I'm in good hands with Doc B
Meanwhile, two things. I've seen a physiatrist who doesn't think I have PD and we're trying botox injections to try to help my leg sluggishness (which even Doc B says isn't PD) but in conjunction with this I realized that I need to work harder to help my right arm stay strong (muscles are strong but...). One thing with my hand/arm which I noticed before my neurosurgery is that my left hand moves faster than the right, often causing typos because of that. I also get random "o"'s in my typing because the finger triggers.
Second, I needed a D&C this past week so I had to get off the Azilect. No real difference except that I wake in the middle of the night more. I've tried skipping some requip doses but then I was feeling that the leg was acting up more (harder to walk) but yesterday it happened and I hadn't missed a dose in three days. I need to call Doc B's office for a refill script so I may ask about being off of it for the April appointment. I'll keep it up for a few days though because I have a two hour drive to do (each way) and I hate when the leg is stiff and I have to drive.
Hi Sunshine, good to hear from you. I can relate to the typing speed from one hand to the other as I constantly overshoot with the left hand which is faster than the right. Frustrating as I have to use the back space button a lot. I live in Northern California so a fair piece from New York.
I saw the neurologist and basically he's not ready to label my symptoms PD. The EEG showed some minor brain trauma in the right temporal area but he says it's the wrong side and so minor it wouldn't matter. Like you he wanted to increase the Sinemet to heavier doses to try (2-1/2 to 3 tablets 3X a day). I had tried 1 tablet 3X a day so I told him I wasn't comfortable with that. So now we agreed to see what happens as time goes by and recheck things in 3 mos. My arm feels very weak but is strong so it's a sensation it seems. This stuff is strange.
Have you ever had any head trauma? I've incurred a few bell ringers and wondered if the symptoms could be related to brain injury?
I'm interested in following your progress as things sound very similar. Thanks for the update!
Gloria, good luck with the doctor on the 8th & 23rd, I hope he/she is right that it isn't PD. Have you seen the motion specialist before? With both unsure of the diagnosis it gives some hope but then what is causing the problems? If it's been going on since 2004 have things progressively gotten worse?
I smacked my head a good one the other day and now my right arm is weaker than normal. I saw a internist who is fairly comfortable things are o.k. (after all it isn't him) but the nausea and headaches are annoying. I have had a few head bangers in the past so that's what prompted the earlier question. It makes me wonder what it is that triggers PD or PD like symptoms.