Dystonia in PD

Hi Everyone

I was diagnosed with PD 9 months ago with mild symptoms mostly neck pain and left foot (toe) dystonia when I walk.I started taking Sinemet today.Does anyone here have experience of PD with toe cramps (curling down) an treatment with Sinemet?

52 Replies

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  • Hi - Yes I get toe cramps which makes it difficult to walk safely. 4 things have helped me loosen the muscles in my toes/foot:

    1) Hold on to the kitchen counter and raise yourself up on your toes. Do this about 25-30 times. Yes it will hurt but it helps loosen the tight muscles that are causing the toe cramps. I do this when I am waiting for the microwave.

    2) Wear non-slip socks around the house (the socks with rubber dots on the bottom) instead of shoes. Your body weight will force your foot to walk flatter and not allow the muscles to curl as much as they can inside shoes.

    3) Walk on a treadmill in the non-slip socks. Start very slowly and hold on. Then you can gradually work yourself up to a fast walk for at least a mile a day.

    4) If it is warm outside wear flat sandals. It will have the same effect as wearing non-slip socks. However my doctor warned that you should not wear flip flops - as your toes naturally curl to grip these shoes.

    Hope this helps!

  • Thank you Tid for the useful information.Does medications (eg. Sinemet) help your toe cramps?

    Many thanks

  • I take Sinemet for PD but I don't think it helps with toe cramps. I haven't even figured out if it helps with tremors.

    I also take Magnesium Citrate 250 mg before bed to help minimize night time leg cramps. I know it helps with leg muscles as I have terrible night leg cramps if I forget to take it. So since it helps relax leg muscles it probably helps with toes as well. Magnesium is a natural muscle relaxant. I have read that magnesium citrate is absorbed better than other forms of magnesium. According to the bottle, you can take 2 tablets a day but proceed with caution as it is also a natural laxative.

    I also have 2 muscle relaxants prescribed by my Dr. that I take as needed:

    - Cyclobenzaprine 10 mg for nighttime (it also has a sedating effect)

    - Methocarbamol 750 mg for daytime.

    Sorry I didn't think to mention these until you asked about medication.

    GOOD LUCK!

  • Thanks Tid.

    I have been taking Thiamin 3grs daily which has 600mg of Magnesium in total. The Thiamin (Vitamin B1) has stopped my PD progression and the toe cramps and a bit of neck pain has been my main problems in the past 1.5 year , that’s why I started Sinemet today.

    You can find the research details about B1 vitamin here.

    ultimaedizione.eu/costantin...

    Thanks again

  • administration of high doses of thiamine to patients with PD was effective in reversing the parkinsonian symptoms; we then suppose that the parenteral thiamine supplementation may play an important role in restoring the survivor neurons and in limiting the disease progression, and that the dysfunction of the thiamine-dependent processes could be a primary pathogenic pathway leading to the death of dopaminergic and non-dopaminergic neurons in PD

  • thank you - I will read this

  • Hmmm good point but I've been wearing flip flops with no issues

    I can't keep the other kinds on my foot

  • I truly believe that Thiamine would stop the PD progression. I had a chance to visit the Italian neurologist who found this for the first time. Since I have been using Thiamine my condition got much better and my PD reversed.

    * Disclaimer ;Please consult your doctor or health professionals before taking any medications.

  • Kia,

    What brand? What dose? Did your symptoms regress?

  • Hi aspergerian

    I take VITAMIN B1 from BIOVEA.The strength for each tablet is 500 mg. I take 6 a day.3 in the morning and 3 at noon before meal.Please note that the dosage for each person is different.For me took 3 months to find the right dosage. My PD progression is completely stopped.

    * Disclaimer ;Please consult your doctor or health professionals before taking any medications.

  • Since the progression has stopped, are you getting better? That's the preparation that I was taking but I was never taking 6 tablets I think two was the most.

  • I feel much better. I wish I could send you my now pictures and 7 months ago to compare!

    Again right dosage is the main concern that can be reached over time. Plus exercise and active life.

  • Following my usage of Sinemet I now have constant foot pain (affected side only ) and curling toes, but as my neuro said I do not know how bad I

    would be without my daily intake of Sinemet.

  • Hi ramondo4

    I can send you the Italian doctor assistant email via private message so you can send her your question directly and she normally gets back to you within 24 hours.

    Let me know please.

  • Please let me know the email so that I can also ask some help about my husband's tremor he is more than one year diagnos of parkinsonpls thanks.my email address alma.cubon@deped.gov.ph

  • I sent you

  • Thank you Kia

  • Sorry Kia my e mail is ramondo77@outlook.com

  • Hi

    I sent you her email via private message.

  • Can you send me the doctors email please?

  • My mail is jimclyne316@gmail.com

  • I sent your via this site messaging system.

    Please check you should have it now.

  • Ask about Amantadine

    It helps lessen the sinemet induced dyskinesia

  • Thanks Cbgs

    I have no dyskinesia but Dystonia when walk fast.

  • It helps with that too

    My ankle, foot & toes curl less than before I took Amantadine

  • I will ask my Neurologist to prescribe for me.

    Many thanks

  • Are you taking immediate release sinemet ?I switched to extended release ( aka continuous release )

    It has a smoother, more level effect

    Also reducing the amt of movement

    I hope this helps

    C!

  • Many thanks

    I will do

  • I am using immediate release. Will try extended one.

    Cheers

  • After seeing a podiatrist about my toes he suggested toe sleeves so I tried them and they help keep them straight. I use all the time. I usually put on my second toe which seems to be the one that balances them out for me. You probably have to do trial and error to see what works for you. Available at drug store s or Amazon.

  • Many thanks. I will research the toe sleeves.

  • Can you mount an image of the sleeves to the toes to reduce cramps

  • I'm on stalevo n sifrol but still suffered from ankle n toes cramps / curling. Doc put me on matapa which definally help with symptoms.

  • Where do you get thiamine?

  • Sorry Kia17 could you send that e mail address to me

    at Ramondo4@sky.com

  • Solgar Vitamin B1 (as thiamin HCI) 500mg

  • I believe so

  • Thiamine mononitrate is in the B vitamin group and is water soluble.

    Allithiamine is a fat soluble thiamine derivative as opposed to thiamine HCL which is water soluble only. In comparative absorption studies it was shown that allithiamine is absorbed & penetrates the cell membrane far better than thiamine HCL, the usual supplemental form.

  • Totally agree but the longterm side effects of lipid soluble vitamins is debatable.The gradually depositions of lipid soluble form of Vitamin B1 in the body organs is the main reason that the Italian neurologist avoid prescribing this version and suggesting Thiamine instead.

  • as in allithiamine and thiamine hcl?

  • Allithiamine is a lipid-soluble form of B1 while Thiamine Hcl is water-soluble form.

    In my opinion Thiamine Hcl is safer than Allithiamine and Thiamine Mononitrate is safer than all other forms for a longterm use.

  • added today Thiamine Mononitrate to my current allithiamine dose, bringing total to 800mg / day.

    That, if right, comes to 5.6g / week.

    Next week exclusive of other forms of B1 I will start/follow Doc Costantini's recommend: 2 x day (4 tablets am and pm) Solgar Vitamin B1 (as thiamin HCI) 500mg

  • Please contact your doctor before making any changes to your medications.

    Best,

  • I have not changed my medication. I did change my supplement. :)

  • All the best.

  • nothing to lose

  • Sorry that should have been ramondo4@sky.com

    I must be losing it, many thanks though.

  • Hi

    I sent it via private message from healthunlock.com messaging system.

  • I've been wearing toe socks with flip flops ... huge relief from being stuck in shoes !

  • I treat toe curls as an indicator that I need to take a dose of C/L. In my case, they respond well to levodopa. As part of my PD experience I have other dystonic symptoms: a stoop and a lean which come on slowly, levodopa helps, but doesn't eliminate this; shin pains which come on rapidly, again levodopa helps, but doesn't eliminate the problem.

    John

  • When I start getting the toe cramps, I know it's time to take another sinemet, as it stops them. Although, taking magnesium has helped ease them a little.

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