Original symptoms, 2 years ago, slight right hand trembling, odd feeling in my head with stirring or washing hair motion, slumped shoudlers

[parkinsons1]

when walking. I was put on 2 25/100 Carb/Levo a day. Thot I might have some improvement. I've had uncontrolled blood pressure so dr's have been trying to figure out what's goning on there. For last year, don't have any noticable improvement in movement after med even if taking w/ carbonated beverage and now am having awful time thinking or performing simple tasks. In September neurologist started me on Exelon. Questions : 1) what are side effects of taking Sinemet if you don't have PD 2) Does untreated PD progress faster than treated as my neurologist said 3) anyone have those symptomes of odd feeling in head from stirring/washing hair 4) what are your thoughts on my excellerated thought process deterioration? Neurologist continues to tell me I have mild PD

[maryalice]

Maybe you need to get another doctors opinion. Look for a Neurologist who is a Movement Disorder Specialist. Blessings.

[Bitbit]

Is the head feeling like tingling? I get that, it doesn't hurt, just feels wrong. I never heard anyone else mention it. I was convinced it was stroke not pd, but MRI was normal. Can you explain more what it feels like? Is it often?

[jillannf6]

hi i havW PSP a type fo parkinsons but the brain is affected differnentlhy and there is no tremor AND NO MEDS FOR IT

Fallign over (LOSS FO BALANCE)

INABILITY TO CO ORDINATG HANDS AND LEGS

DOWNWARD GAZE PROBLEMS

HANDWRITIGN V SMALL AND NOW COMPLETELY ILLEGIBLE

MOVEMENT DISORDERS SPECIALIST DXD ME 2 YRS AGO

ETC ETC (gooGLE IT OR READ MY BLOG)

HEAD DIZZINESS BUT U NEED TO DESCRIBE IT A BTI MORE

LOL jiLL

[hilarypeta]

Im 6 years in..no medication, same original symptoms...still walking normally etc .symptoms..incontinent when nervy, too much saliva, voice goes if not doing exercises. Do gi gong and eat carefully. Stiff right ankle and wrist. Exercise diet the key. Posiive thinking.

[Dennis in reply to hilarypeta]

My voice is about gone as well. What type of exercises do you do? ~Dennis

[PatV]

progression does not seem to be affected by meds although neurologists had hoped dopamine agonists were neuroprotective.

On the other hand in my experience any surgery or bad infection (I've had a long list ) caused my PD to advance noticeably. For a time I thought I was housebound, but exercise and good friends helped me to get out. I agree with hilarypeta: Exercise, diet, higher power

[PatV]

Have you had a check up of your spine? My son had tingling in his hands and feet and Xray revealed minute breaks in vertebrae. Healed now, but scary.

[driller]

I think you should get a 2nd opinion, i am sure your dosage is to low Carb/Leva should be raised.

Also my memory is so bad I can't even spell corectly, and forget things all the time. I have no side effects from my meds

Regards;

ERIC

[honeycombe3]

This may seem an odd question but how old are you? Sinemet is 1 of the most 4 most popular choices of med for PD but it is not always appropriate for newly diagnosed (dxd) younger patients. I am part of a 10 yr trial at Birmingham Uni (UK) in which patients are given 1 of those 4 drugs at random & must stick to it a for a set minimum time. I was prescribed Sinemet (age 55) & I thought I was dying. After the set time I changed to a dopamine agonist Requip & have taken it since then. After over 8 yrs I now take Sinemet as well (less than 1 yr).

[mistydog1]

Levodopa and carbidopa controls Parkinson's disease but does not cure it. It may take several months before you feel the full benefit of levodopa and carbidopa. Continue to take levodopa and carbidopa even if you feel well. Do not stop taking levodopa and carbidopa without talking to your doctor. If you suddenly stop taking levodopa and carbidopa, you could develop a serious syndrome that causes fever, rigid muscles, unusual body movements, and confusion. Your doctor will probably decrease your dose gradually.

I took this info straight from the insert that comes with the medication. I would talk with your doctor it may be that he/she needs to adjust your Sinemet too. It took a period of a months of adjusting my dose and timing before my doctor found what worked for me. When I was first dx the action of simply washing my hair was a big effort now I am fine . Another thought timing around food intake plays a role with Sinemet and avoid high protein things like milk, peanut butter, cheese, eggs ect. Hang in there !!!

[Maria29]

I was diagnosed in 2008. I am 67 years old. I think you should seek a motion disorder specialist with a special interest in PD. I take sinemet , requip and azilect. So far these drugs have helped with my movement issues and have kept my quality of life so that I can enjoy most of the things I used to do. However, your blood pressure issues are especially interesting to me. I have had the "fuzzy brain" thing for awhile. This past summer my blood pressure would suddenly drop very low and I would pass out. Then my BP began to go all over the place. I have now been diagnosed with "parasympathetic neuropathy" which is caused by a neurological disorder ...........PD. So , PD is the disease that keeps on giving And there are so many aspects or manifestations it is sometimes not recognized. Dr's say this can be treated......but it means more pills. I am beginning to feel like a chemistry experiment..

[ParkinsonSpouse]

My husband had some of your symptoms when he was diagnosed with Parkinsons. His symptoms: He felt like he was falling forward when he walked, his movements were very slow, his thinking & answering questions were very slow, slumped shoulders when sitting, excess saliva/drool on his pillow at night, hitting & shouting out while sleeping, felt like he was shivering on the inside, felt one leg twitching when he rested, but no one could see it, he shuffled his feet sometimes.

The Cleveland Clinic neurologist, who specializes in movement disorders, started him on Amantadine which surprisingly eliminated most of his symptoms at that time. Which is also the reason he was diagnosed with PD. When the neurologist was sure my husband had PD, he also prescribed Azilect...which is an expensive medicine that is supposed to help with dopamine & possibly slow the disease if it is started soon enough. However, the neurologist said that Azilect has been somewhat disappointing & has not been as successful as the medical field had hoped.

(We were told that PD is very hard to diagnose, the only reason my husband was diagnosed with PD was that most of his symptoms disappeared when he took the Amantadine...maybe you don't have PD) There are other diseases similar to PD. As others have suggested if you can find a neurologist that specialized in movement/motion disorders, you will receive more specialized treatment.

Also, we've been told that PD progresses at different speeds for everyone. Some people it progresses fast, others slow. Meds like Azilect were originally thought/hoped to slow the disease if started early enough.

My husband took Amantadine for a little less than 2 years, but started having trouble getting to sleep & a couple times a week he'd be awake for 26 hours at a time so he was taken off Amantadine. Too bad because other than the sleep problem there weren't any other side effects of that med that we're aware of. He is taking Mirapex Er now, along with Azilect. Mirapex ER can have a lot of side effects!

I've read that not all PD meds will work for everyone...what might work for one person, might not work for another.

If possible, you might want to seek a second opinion.

[parkinsons1]

Thanks for all your responses! What a great resource you all are. I'll try and answer your questions:

It's hard to describe the feeling in my head when I stir, etc. It's not dizzy, just odd. It also makes me a bit queazy. I don't always get it and it's not that my hand doesn't work, it just gives me the odd feeling.

I'm 78.

I am headed to Cleveland Clinic today for my blood pressure & other issues. It is high 210/110 in the morning, drops to 90/45 mid-morning and then spends the rest of the day going up & down but rarely quite as low as mid-morning lows. I had my kidney removed as it was atrophic & the thought at the time was it possibly was causing the high bp (I was on so many meds/combos that the dip in midmorning was masked & blamed on med. I now take very low dose bp med). I'm scheduled to see a nephrologist & endocrinologist but hopefully CC will pull in a motion specialist neurologist. My neuro did try to titer up my cabo/levo but it caused me to turn dreams into real happingings and I couldn't straighten them out even with the help of family. Once I reduced the dosage to original, that all went away. This symptom has happened to me 2 other times. Both times I had been cold-turkeyed off of cabo/levo. Symptom went away after staying off for a week or so.

I'm gathering that none of you are being told your pd would progress faster untreated. That the "hopes" were the meds would slow it down, but no evidence. I ask only because I wonder if I should, w/ dr's approval, stop carbo/levo & Exelon completely for a time & see if I'm worse. The Exelon was prescribed as a precaution 4 months ago, but my memory & thought process are tremendously worse since July & the failure is completely excelerated in the past couple of months.

Btw - My daughter helps me put these thoughts together & type. I wouldn't be able to do it w/o her.

[Hikoi]

You describe quite typical PD problems parkinsons. As well as the movement problems our autonomic system is affected which includes BP. You may like to google autonomic dysfunction and Parkinsons. Your low BP is likely to make you feel quite unwell.

Nothing yet has been proven to slow PD but exercise has shown the greatest benefit! Hope you get sorted soon and remember to drink plenty of fluids, helps especially when your BP is low