Newly diagnosed

Hello. I'm 45 confirmed diagnosis in May now on sinemet 3 times s day. My ankle on my affected side is very painful and swollen, my toes curl and foot is swinging out. I'm finding the meds wear off and I then my shuffle and slowness return. I'm having brutal mood swings and crying spells. I feel as though I'm losing my mind. I suspect I'm still trying to accept my diagnosis however, it is very high and then very low. Anyone have suggestions for this foot? I've been happy to walk at a normal pace again but now my foot is painful and behaving strangely. I also find if I eat any protein at all my meds stop working immediately. I just started back to the gym to try to get back into shape and everything hurts all of the time. Hip flexors are so tight it brings me to tears. Does anyone have any suggestions? I see my neuro next week and I don't even know where to start with the questions. A little amazed I was prescribed meds and literally sent on my way. It seems the only way to get good information is a forum like this. Has anyone had better luck with extended release sinemet as mine seems to last only 3-4 hours. Sorry for the bombardment every day is a new symptom. Thanks for being here.

36 Replies

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  • Personally I have found a world of difference between the immediate release and Controlled Release ("CR") version of Sinemet. The immediate release was unsatisfactory versus the CR which keeps my dopamine level steady and smooth as silk.

    For tight muscles I have a Yoga routine I do every morning first thing upon arising. That helps a lot, but the most important thing is to get the medication recipe working right.

  • Thank you. I will speak to neurologist and yoga is great advice.

  • Don't underestimate the shock of a PD diagnosis. It's not madness to be very upset by it. But as you learn how to deal with your symptoms your mood will improve.

    Re the seeing Neurologist (hopefully a specialist in PD) write the list of question before you go and take it with you, along with list of your medical history.

    Excercising is vital, work on extension more than flexion.

    For advice about everything PD related try the ParkinsonsUK website.

    Good luck, M

  • Thank you. I'm feeling quite isolated I really appreciate the support.

  • Hey Jenzo , welcome and sorry to hear about your diagnoses. You came to the right place. Listen to everyone and then do your own research. Your story sounds very much like mine. I was 46 when I was diagnosed and that is after 2 years of trying. Let me guess besides the Parkinson's you are going through something very stress full right now. I know its hard but do what ever you can do to relieve stress. As for meds 4 to 5 hours is about right whether time released or not. Sinemet is the Gold standard, and just about everyone is started on it. One tab 25CD/100LD 3 X a day is also pretty standard. I also have the foot problem. For the toe curling try walking backwards it will loosen up. You can also practice your (Ministries of Funny Walks), this will engage different muscles. Sure it might look stupid but I will have a funny walk eventually, might as well start now. Protein will interfere with absorption of Dopamine. You will be placed on a pharmacy of meds just wait. If you are like me its the mood swings that are the hardest to deal with. I am afraid that you will go through a lot of trial and error on the meds and remember to be very open with your Doctor, if you are self medicating with alcohol let them know. There are several types of anti depressants which you will have different effects on you again be truthful. Each one of us is constantly morphing so we are constantly adjusting our meds. Also it takes weeks if not months for your brain chemicals to become level. You also sound like your anxiety is off the charts. I would ask my Dr. about Alprazolam (generic anti anxiety) meds. For your muscles ( dystonia ) there are a bunch of choices from amantadine an anti-viral to cyclobenzaprine a muscle relaxer to Botox a muscle paralyzer. You might look back and find you are not on any meds you were on last year. Hang in there. Parkinson,s is like a hurdle race, you run as fast as you can until you reach the next hurdle and you may need a lot of peoples help or self education to get over that hurdle and then you race to the next.

  • Coconut oil (3 Tbl/day) helped my mood & overall feeling and Emergen C helped my stiffness and pain.

  • laglag, I know your post was in response to Jenzo's question but i appreciate the info from your post as well. Thank you. ~DF

  • You are welcome. The info is for anyone that needs it. I hope it helps you!

  • Take a deep breath and try to focus more long term. This is a chronic process and there are no immediate mandatory meds; there is a relative minority group that tries to limit exogenous dopamine. Going from sedentary lifestyle to abrupt gym rat will make Anyone sore; go for it, but build up. The worst part of a new Dx is psycho-social. 3.5 yrs into this, it is progresscely clear that positive outlook is critical with PD (like in life in general)

  • Thank you. I was at the gym until a year ago my walking and balance made working out difficult. I've always been an all or nothing person. Thank you for the support and advice.

  • Jenzo

    Are you on any other meds or only sinemet? Have you had symptoms very long time before diagnosis? I ask because you describe wearing off symptoms. I think your post gives a good outline of what is happening to you and I would show it to the doctor next week. The first year is the hardest, it's a lot to get your head around this PD .

  • Thank you. I have had symptoms for at least 5 years. Tremor and weakness one side left only for several. This last year my walking deteriorated quickly and I could not walk fast and had a dragging in my foot. My right hand also started with tremor. I was told for several years I had essential tremor but shoulder stiffness, ankle rigidity and my slow/shuffled gait was finally diagnosed in May. I have had thyroid disease for about 17 years (hypo) so I take synthroid and allergy meds.

  • Your story very much like mine. The foot dragging finally got me to the neurologist and a correct diagnosis. That was a year and a half ago. I am actually doing much better now than before diagnosis. With the right dose of Sinemet CR the muscle stiffness has let up. If I didn't say anything friends would not know my diagnosis at this point. Only other PD med I take is Azilect and not sure it actually does anything for me.

  • I was told that Azilect will go generic next year. I sure hope my

    Pharmacist is right.

  • You can get it internationally for ~$1/pill

  • Are you serious. It is 500$ /month in AZ

  • Yes. Here:

    buypharma1.com/Rasalect-Ras...

    $.80/pill, 1 mg. I have dealt with this company and can vouch for their honesty. Delivery time varies, anywhere from 1-3 weeks.

    Also, contrary to popular misconception, it is legal for an individual with a prescription to import their own meds.

  • I'm fortunate enough to still work so I have some coverage and it is Canada. When I can no longer work that might all change.

  • NO , his story sounds more like mine. lol

  • Hello jenzo

    I takes time to adjust to your new life and take all the time you need. Scream jump up and down they both do you good. It is great exercise and helps relieve stress. As for meals eat small meals 5 or six times a day. It is not only what you eat but how much. I have been fighting pd for 11 years and just in the last year i have got it right. You can get PD under control but not completely. How much sinemet (it is carbidopa-levodopa) do you take and do you take any thing else. You have one great advantage over me you have the knowledge of the 6,000 or so people here to help you. Be proactive and never give up until you get it right. Talk to you neuro about your meds and try to increase them i find taking the largest dose that i can helps a lot. It is trial and error good luck.

    I take carbidopa-levodopa 1 50/200 er and 1 25/100 , 5 times a day Every 4 hours.

    1 Azilect, and 1 requip 6 mg 24 hour

  • Thank you. I appreciate the advice. Knowing I'm not alone and not crazy is so helpful. I will try the smaller meals. I take synthroid for hypo thyroid and allergy meds. Thank you.

  • who said that you are not crazy??????

  • Crazy indeed! But not losing my mind. Thank you for the support. My neurologist upped the meds and frequency as well suggested I take then closer together so we shall see. I was also prescribed a drug to extend the life of the sinemet called entacapone which sounds a bit like an Italian gangster.

  • A warm welcome.

    Tinkering with your meds to get the perfect dose, the perfect combination, can take a while. I had that foot problem too, then my doctor lowered my sinemet dose and it stopped almost immediately. She also prescribed an anti-depressant called Cymbalta, which also mitigates nerve pain considerably. That helped me do what became my daily workout (there were some crashing pharmaceutical failures along the way).

    I do some tai chi in the morning and yoga at night. I also recently started Rock Steady Boxing, an amazing program aimed at people with PD. The workout is rigorous but re-energizing beyond belief. I go three times a week, and do the exercises on my own the days in between. Today my son and his GF came over and my son said, "Mom! I can't believe what good shape you're in!"

    What I'm saying, jenzo, is that a year from now or less still, I expect you will feel much different than you do today. You will be able to go about your life.

    I've learned so much from the people who post on this site and I'm so glad you joined.

    Check this out: rocksteadyboxing.org/

  • yes I am on 8 mg of Ropinirole ER ... but i do believe it comes in 10 and 12. I am also on other meds such as azilect, amantadine, zoloft (anxiety/mood), cloazapam (for REM sleep disorder), and 1/2 mg 3x daily sine met...so a combination of things all treating different symptoms...do talk to your doc about meds for all your symptoms.

  • Hi Jenzo. You are really having it bad. I have little knowledge of pain with my Pd. The toes curling up is due to Dystonia, which is common. You will find that you can consciously uncurl them and try to keep them uncurled by putting your weight on them after you have ncurled them. There are lots of tips on my website - reverseparkinsons.net and you can talk to me on the website.

    I have had Pd for 53 years although it was only diagnosed in 1992. Since 2002 I have been medication-free and live a normal life at the age of 81

    Good luck

    John

  • Jenzo

    youngparkinsonsnetwork.com

    An online community you may like to check out

  • I was offered Sinemet but declined and requested Azilect instead. That plus exercise help me stay pretty steady for 3 years Now on amino acid therapy through Brain Body Wellness Center in Dallas. BBWCA.com

    Too early to see results since they say it takes about 4months. But they claim 80+% reduction of symptoms.

  • LOTS of exercise. I have a great neuro in Sacramento. And P/T who has given me lots of exercises. Plus I have a recumbant bike that I ride daily. Please check out many PD resources on line-educate yourself. In my 2nd year of Parky and I'm 67 and just retired! In May my doc gave me an RX for Contan to help in the "off" times. Like you I walk with a shuffle before the meds kick in. BE ENCOURAGED. This is a wonderful blog. BLESSINGS

  • Hey I am KOMMANDOKATE...egads NOT COMMAND CATHETER??????yikes not ME!!

  • Really suggest you try magnesium. It has stopped my toes from curling and I can now walk first thing without crippling foot pain. If you are working out and sweating you probably really need it. Get the soluble stuff and take it 2 hours before bed. This is just my experience - never mentioned by my dr!! But I don't think it can do any harm really. Epsom salt baths may also help - more magnesium and also relaxation.

    I was diagnosed 3 months ago. Fun times!!

  • Jenzo, Welcome. I am kinda a newbie here myself. There are lots of wonderful ppl here and i have learned so much more from them than i could have ever learned going it alone. I was diagnosed with PD right after my 28th BDay and I will be 43 this years (yikes)... but I continue to try and hang in there. It has helped making friends and connecting with ppl on this site (I don't feel quite so alone) and when times I feel afraid I log in and read to see what others are going thru.

    I take the new med Rytary. I am on the highest dosage that you can take plus i have Dystonia issues. That make my toes curl and affects my whole body during a Dystonic attack. What helps my muscle spasms is Ativan, finding a muscle relaxer that works for you, and taking a Benadryl, which an ER Nuero advised me about. Also one of the members that I really admire and seek advice from on this site, advised me to soak in Epsom salt, which really helps. ;-)

    As others have already stated stay clear of foods high in protein because they will really mess your meds up, so try not to eat meats, etc right before or after dosage time.

    and of course, EXERCISE, EXERCISE, EXERCISE, but don't over do it and I think the most important piece of advice is the more positive you can stay the better you will be. Depression is my worst enemy and negative thinking.... I am really battling that myself. The happier i am the better my meds work, which I realize is not always easy when dealing with PD. Also having a hobby that keeps your mind occupied has helped me. The busier you are the less time you have to sit and think of the negative.

    And talk to your Dr that is what he is there for... and if you feel like he/she isn't listening seek out a new Dr.

    You have come to the right place to meet wonderful ppl that will be a helpful and help guide you in the right direction.

    All the Best to you,

    Darkflower

  • Yes I can identity. CRYING FRUSTRATION AND THE dystopia. I don't exprince these symptoms much because I have been honest with my neurological specialist and together we have come up with a plan of attack on the symptoms of parkinsons. I am on medicaton every 3 hrs 4 times a day. I start at 9 in the morning and take last dose at six . Things seem fine most evenings . Here is what worksfor me . A good dose of exercise walking. I used to get the curled toes and ankle twisting but don't experience it that much now . I identify with the walking back words but what I do now is stop wait for the curl to come out and the ankle twist to simmer. Then I coninue on . Do I have off times - yes. Here is my meal of medication. Dose one neupro 4 mg patch which is worn for 24 hr period 150mg mylan bupropion xl for depression 100mg amantadine for energy 200mg entacaporn (comtan) which is suppose to help more cardopamine get to brain and of course 100/25mg of levocarb. The other 3 doses are minus the bupropion. Makes for a great day of quality lifestyle . I have a great neuroligest that sees me every 6 months. Couldn't ask for any better. I have been diagnosed about 11 years now. We have made good cautious changed over the years and we're able to come up with the tight mixture for me. Keep the faith. Life can be good even with parkinsons. I love to read these post and the suggestion of products other people are on. What works for 1 person may work for another. I do suggest talking over products with your specialist before making any moves. The cancer society has a program to raise money called run for the cure. Mine is walk for the cure . I hope for that day to come. Sorry bring so long winded.

  • "Hip flexors are so tight it brings me to tears. Does anyone have any suggestions? "

    everydayhealth.com/hip-pain...

  • Here are several options for you. I have personally used DMSO and if you want more information about it I will forward it to you. Using it is more complex that the article suggests.

    Therapies for Treating Bursitis Naturally

    drdavidwilliams.com/natural...

  • Hi - I was diagnosed in 2004 and was doing great until about 2 years ago - my left side big toe begsn to curl downward and the ankle would turn inward - worst pain ever! The episodes would happen 1-2 times per day and could last up to an hour. I didn't go out of the house for months...I talked to my neurologist and here is the regimen I now follow every day - I'm actually to the point now where the ankle doesn't spasm but occasionally I still get the toe curl.

    Stalevo 125 7:00 am,10:00am, 2:00 pm, 6:00 pm. 10:30 pm

    Trihexyphen 7:10 am, 12:30 pm, 5:30 pm. (For tremors)

    Cyclobenzaprine 5 mg (muscle relaxer) 7:20 am and 11:00 pm

    I take these at 10 min intervals before I get out of bed and drink 16 oz of SMART WATER (for the electrolytes) - very important to drink a lot of water throughout the day to stay hydrated.

    Also, try to do 30 minutes per day on my exercise bike and take the following vitamins: Vit D 1000 - 3 per day, Vit B-12 - 1 per day, magnesium - 1 per day and COQ10 - 1 per day.

    Also reco drinking small amounts of tonic water to help with the toe spasms - be very cautious with this as it contains quinine -- and pls check with your neurologist - every patient is different. It's a never ending battle!

    Hope this helps - let me know if I can be of further help!

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