Does anyone have dystonia? I have dys... - Parkinson's Movement

Parkinson's Movement

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Does anyone have dystonia? I have dystonia in my neck and feet (causing my head to tilt to the side and my toes curling)!!

maidar
maidar

I go for Botox injections every 10 weeks but they are so expensive ($12,000 with me paying $800 co-pay)!!

Does anyone have similar problems along with the PD and how are you managing?

Thank you!

54 Replies
oldestnewest

I also have the head tilt and also dystonia of eyelids and get botox for both every three months. It is expensive but Medicare and my insurance help pay....I'm starting to have vision problems a side affect of thr botox. I will have to talk to my MDS at my next appointment. But without botox, my eyelids won't stay open.. yes I. have PD.

ivyanne
ivyanne in reply to ivyanne

The botox.injections do hurt like crazy especially in my eyelids but worth the pain. Between Medicare and insurance the botox is covered except my deductible

I have dystonia of the feet and calves. I receive botox injections every three months.

maidar
maidar in reply to margie

How much do you pay for the Botox?

margie
margie in reply to maidar

I pay zero . Medicare and my secondary insurance pay. You can check with the doctor and they will check with your insurances to see if you have to pay anything.

me to I get it in my face left leg and right foot. very pain full. I get no help a all .

maidar
maidar in reply to export

So, how much do you pay for the Botox?

I got Botox injections for the first time a couple of weeks ago in my foot. Never again! It was the most painful thing I ever experienced. I think I have a high pain tolerance.

maidar
maidar in reply to Brooke

My doctor sprays my feet with a numbing spray before the injections and that helps with the pain! Also my significant other hold my hand !

margie
margie in reply to Brooke

The injection sting, but my dystonia is 100 times worse than the shots. Besides the shots only take less than a minute each. Dystonia for me lasts for hours at a time several times a day.

How long do the injections work for and now difficult is it to get . Who arranges it it

I get the injections in my neck and feet every 10 weeks! It is administered by my neurologist at Yale!

tlongmire
tlongmire in reply to maidar

I have severe Cervical Dystonia. My head goes to the left and rests on my chest. I can lift it depending on how tight my muscles are but it doesn't stay long especially when walking or standing. I've had 3 Botox injection sessions with no improvement. Where are you getting the injections in your neck; a few people don't think the right muscles are being targeted.

Terri

I have found that acupuncture has helped with the stiffness that the nasty ole dystonia causes in my legs, etc, Insurance does not cover,,,,Duke was 90.00 per session while the Health Center is less than 40.00 per session. It pays to shop around!

maidar
maidar in reply to grandmasanta

i think I will try acupuncture next!

Are you a candidate for DBS? That may help you.

maidar
maidar in reply to 98Rob

no, my neurologist tells me that I am not a candidate for the DBS!

98Rob
98Rob in reply to maidar

I am sorry to hear that.

Hidden
Hidden

Maidar, I was diagnosed two years ago with PD because of a left foot limp. Now its called the "honeymoon is over" after the Levodopa/Caribdopa I have taken for two years begins to "wear off" before my next dose. I get the claw-like foot and severe cramp (painful) in my leg before the next dose and it remains for awhile after. I have a specialist appointment on Oct. 23 and I hope he can change the medication or add something to stop this. I NEVER had this before I took this "gold standard" for PD.

Maidar, I will keep you posted, if another medication helps to alleviate this side effect.

Do you take a medication that would cause this?

maidar
maidar in reply to Hidden

I take Baclofen(10mg) 3 times a day!

tlongmire
tlongmire in reply to Hidden

Puddlejumper, What is the dosage of Carb/Levo and times per day are you taking? Any other PD meds?

Hidden
Hidden in reply to tlongmire

tlongmire, Two years ago I was started on Levo/Carb: 100/25 mg. 3x per day. I take Selegiline: 5 mg. 2x per day early in the day and still take the same amount. I also take LevoCarb CR: 200/50 mg. one at bedtime as well as one Clonazepam: 0.5 mg. at bedtime.

In early Sept. when my claw foot and pain began, my specialist prescribed one more Levo/Carb: 100/25 mg each day; in total now I take 4 Levo/Carb per day (4 hrs between each dose). The extra one added per day did not really make a difference.

When I see my specialist on October 23, as mentioned to maidar, I hope some kind of adjustment can be made. I do not have tremor.

honeycombe3
honeycombe3 in reply to Hidden

Puddlejumper, I have had clawing since I was dxd 9 yrs ago & have tried several ways to control it - natural & drugs. I only started Sinemet over a year ago so this did not cause the clawing though it does help relieve it for me. Requip is the main control though other agonists seem to work as well. At present I take 4 Sinemet + (100/25) daily, 2 x 1/2 Sinemet cr & 8mg Requip cr daily.

Hidden
Hidden in reply to honeycombe3

honneycombe3, Thanks for your response. I never had clawing just a limp in my left leg. After taking the meds for two years, I noticed that the clawing and pain in my calf began just before I need to take the next dose. I see my specialist on Wednesday. Hope there is a resolution.

maidar
maidar in reply to Hidden

OK Please keep me informed

I had DBS in May, everyone tells me they see such an improvement. I feel it has helped me a lot but could be better. I had the right side done which is to help my most affected left side. When my meds wear off my feet get very stiff and painful My movement disorder neurologist gave me the Botox injections and it is not worth the pain even with spray. Plus my foot is not any better.

9 years dx, 7 years on sinimet and I'm starting to get dystonia and dyskinesia. Rock and roll :P

maidar
maidar in reply to PatV

wish I could ROCK and ROLL!

yes, i too have dystonia in my neck and have for years. but my neurologist had me got to a physical therapist, and sent me there. i do exercises every day for my neck. without fail. it first sounded like gravel in my neck, but it did loosen up. now i wouldn't start a day without them. and it a whple lot cheaper.

maidar
maidar in reply to judam9

so what type Exercise do you do??

Have noticed the curling, or "claw" of my toes in the last week or so. 6 years diagnosed. Have also been diagnosed now with what they are calling compression deformity of t5 and t6. Don't see the movement disorder neuro for another 4 months. Maybe I should see him sooner than that?????

maidar
maidar in reply to sherrywolz

Yes go back sooner! I get Botox in my neck and feet every 10 weeks! I really helped my neck! Good Luck!

fronya69
fronya69 in reply to sherrywolz

I think u will have a greater peace of mind if u c if u can get in sooner. They should work w/u. good luck an God speed. Keep us informed, please fronya

I also have toes that "curl"....I find that when walking, if I step on the very "back" of my heal and then put pressure on the "entire" bottom of my heal as I walk...(from heal to toes), it helps to "relax" the muscles of my soles and "relieve" the curl "pain."

As far as your head tilting...I have degenerative arthritis of the spine and also have my head "tilting". I went to the physical therapist and was given some exercises to do to "strengthen" my back muscles, (as I also have severe scoliosis), this seems to help "if" I am faithful to do my exercise routine daily.....Hope this helps!

ivyanne
ivyanne in reply to CJ49

I read that MJF said about His toe. curling when he woke that he would step immediately into hard soled shoes and His toes would straighten out

CJ49
CJ49 in reply to ivyanne

That's great...but my bunions prevent me from fitting most hard soled shoes, plus when I exercise I need good "walking sneakers". I find that Avia , (cantilever) sneakers are very supportive...and fit like "slippers."

honeycombe3
honeycombe3 in reply to CJ49

CJ49 thanks for the tip on comfy shoes. I'm recovering from surgery to 'unclaw' the toes of my left foot caused by PD & bunion surgery on the same foot. After a Scarf & Akin procedure my cast comes off in two weeks so I'm looking for suitable shoes while my foot recovers completely.

CJ49
CJ49 in reply to honeycombe3

Your very welcome, honeycombe3. Wishing you a speedy recovery, so you'll be able to start "strutting your stuff." :0)

By the way have you all had the flu jab . We have both had it for many years but this year I am wondering if this time it did affect him and made his Parkinson's worse .

Anyone else notice this

NO never had the flu or the shots Thank God!!

Hikoi
Hikoi in reply to cabbagecottage

Yes had the injections and no did not make my Parkinsons worse.

What happened 2 make u think it made him feel worse. I just got my flu shot. I am just getting over a upper respitory infection from a pneumonia shot. At least that's what I think. WasSick from Sept. 7- Oct.5th. waiting too hear from y'all. fronya

The Botozx helped me so very much!

what drugs do you take!

Hidden
Hidden

Hello Everyone, i recently joined this forum having been on the PSP site, a couple of family members have PSP and parkinson's and like everyone here i read A LOT and try to research these two conditions.

I am trying to look at alternatives to manage the pain and discomfort associated with them.

Something really caught my eye recently and i thought it might help anybody who maybe interested.

It was by Dr Erin Elster, DC and this is from her website.

I will quote the two case studies which caught my attention.

Upper Cervical Chiropractic Management of 10 Parkinson's Disease Patients.

CASE 2

History: At age 43, this 63-year-old male noticed increasing stiffness in his neck, a head twitch, and a tremor in his right hand. At the start of upper cervical care, his most severe symptoms included rigidity in his neck, back, right arm, and right leg and tremor in his right hand and foot. He also had a stooped posture, a masked facial expression, decreased agility in his right hand, and illegible handwriting. Computerized thermal imaging showed thermal asymmetries up to 0.5ºC. Analysis of cervical radiographs revealed left laterality and left anterior rotation of atlas.

Outcome: After three months of chiropractic care, this patient's main areas of improvement were in spinal range of motion, flexibility, and posture. He reported improved motion, especially in his neck, and the ability to stand up straighter. He was able to take long walks without stooping over or feeling pain. In addition, he was able to stay on his feet and accomplish more during the day without spinal pain or feeling tired. He also reported improved facial expression, decreased rigidity, and improved ability to get up out of bed, to walk, and to arise from a chair.

CASE 5

History: This 53-year-old female experienced her first Parkinson's disease symptoms at 33 years of age. She considered her Parkinson's progression to be slow because she still was able to function after twenty years of the condition but used high doses of medications to do so. She experienced frequent and severe "off" periods of dystonia (abnormal muscle tone) where her head seized to the left and her pelvis turned right. She often would remain frozen in that state, bedridden and in severe pain, for several hours. She rated her Parkinson's symptoms as "severe" rendering her bedridden and non-functional. Although the medications reduced her suffering, she still was plagued with dyskinesias (involuntary movements) 75 to 100 percent of the day. She also complained of neck pain, numbness in her left hand and arm, pressure at the base of her skull, and low back pain. Computerized thermal imaging showed up to 0.6ºC thermal asymmetries. Analysis of cervical radiographs revealed left laterality of atlas.

Outcome: After upper cervical care, this patient reported decreased numbness, spinal pain and head pressure, and increased energy. Her most marked improvement was in the decreased frequency and severity of "off" periods. Previously an episode of dystonia lasted for several hours, while after care it lasted for 30 minutes or less. She felt well enough to drive again and enjoyed her renewed independence. In addition, she rated her Parkinson's symptoms as "moderate and still functional," and the occurrence of dyskinesias dropped to 25 percent of the day.

Also cases 9 and 10

Both of these patients were males over 65 with approximately eight-year histories of Parkinson's disease. Computerized thermal imaging showed thermal asymmetries up to 0.5ºC in both subjects. Analysis of cervical radiographs revealed left laterality of axis in one case and right laterality of axis in the other. Neither subject improved.

All i'm saying is 'It just might help.

Once You Choose Hope, Anything's Possible.

cabbagecottage
cabbagecottage in reply to Hidden

I like your last quote

Hidden
Hidden in reply to cabbagecottage

Thank you cabbagecottage, hope is all we have at the moment and we have to keep thinking help is just around the corner.

earthdweller
earthdweller in reply to Hidden

Hi vjessv,

Those are very interesting studies. I wonder, In Case 2, do you think the man had the chiropractic care at age 43 or at age 63? I can't tell from reading this account, (although maybe it's just me!) For instance, is it saying that he first noticed symptoms at 43, had chiro at age 63 and then saw improvements? Or did he have the chiro at 43, and then these benefits remained until he was 63?

Anyway, he sounds a bit like me. I've had dystonia for many years. (I'm 41 now). And chiropractic adjustment has helped me greatly. I feel as if the dystonia and Parkinson's symptoms are very much linked. When I feel my internal tremors in my right hand and foot I usually also feel tremoring on the left side of my neck, and my neck is turned to the right.

Over weeks, sometimes months of adjustments along with exercises, this tightening, spasming and the severe head and neck pain is gradually released, and in the past I've had complete remissions of symptoms, improved posture and I feel much freer. I have to say that doctors have yet to officially diagnose me with Parkinson's, (they put everything down to stress), but I heavily suspect it as my mum's Parkinson's took a very similar course.

My chiropractor is also unsure, saying that these symptoms can be caused by spinal misalignments. (Of course I'd like to believe that it's not Parkinson's, and quite like being in denial..) As the therapy and exercises do have positive effects it makes me wonder whether the Parkinson's causes the dystonia, or does the dystonia cause the Parkinson's symptoms????

It's very confusing. At present I haven't been to the chiropractor for a long time and the dystonia, right-sided internal tremors and weakness are quite bad right now. So I'm going to start the treatment again and see what happens.

Yes I have Dystonia along with Parkinson's. I was diagnosed in March 2011 as the worst n the country with Dystonia. Since DBS sugeries Oct 11 and 18th, 2011 , the Dystonia is so much better. I my tremors went from my toes all the way up to my neck, I looked like a human pretzel. It hurt like hell and I cried from the jerking motions.

con't...

now just in my legs, and they jerk, but nothing like I was for 10 yrs.

my head to tilts to the side and my toes curling too - my feet feel like clenched claws. have never done botox

Yes I have had this, began in my neck and is now in my shoulders also, its hell! No 2 of not to do is cry, or under go stressful situations, use baby oil on affected areas and a good massage downwards, I am in a wheelchair now, do as little as possible, check its not multiple sclerosis also. But stress is the worst, don't stay indoors, getout as much as you can but DO NOT WALK. BEST WISHES, NICKY X

I have dystonia of the feet and calves. I get Botox injections every 3 months. I am on medicare and my secondary is Tricare for life. I pay nothing.

I'm sorry to hear what your co-pay is. Have you spoken to the doctor to see if he can lower the fee.

Yes Maidar I have neck dystonia when over medicated making speech difficult. Oh and toe curling, foot bent in when under.

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