I'M ABOUT TO LOSE IT. I STARTED APOKYN ON 3-11-14. SOMETIMES IT KICKS IN , SOMETIMES IT DON'T.

[fronya69]

REALLY GETTING SO DEPRESSED WITH IT. I HAVE MAJOR CRAMPING IN THE UPPER BACK OF MY LEGS THAT JUST ABOUT KILL ME. HAS ANYONE EXPERIENCED THIS TYPE OF CRAMPING? THE APOKYN HELPS IT 4 ABOUT THE 1ST. 20-30 MINS. THEN I CAN BARLEY SPEAK IT HURTS SO BAD. PLEASE HELP ME. I'M RUNNING OUT OF AIR. P.S. THIS IS MY LAST DRUG AVAILABLE FOR ME 2 USE. NOTHING ELSE UNTIL OUR WONDERFUL FDA ALLOWS US TO HAVE NORE OPTIONS. ( RYTARY, GDNF, STEM CELL ) I HAVE NO OPTIONS. I'M ONLY 56 YRS. OLD. DX 2001. 1ST. SYMPTONS 1965, 8YRS. OLD.

[Hikoi]

Fronya

This is awful, you never complain and you are always so positive and helpful. I feel so sad when i read this. Sounds like dystonia, the worst kind of pain. Wish I could do more than say I am thinking of you.

[fronya69 in reply to Hikoi]

Hikoi- thank u 4 your kind words. yest.(3-14-14) i took another shot @1:43pm. It kicked in @ 1:50. w/in 10mins.my pain was just about completely gone and i was on. and it lasted 5hrs. Now 2day i'm right back where i was yest. morn. in freakin massive pain. I'm going to try a shot at 1:00pm again. I'll let u no! Thanks so much 4 caring. U made my day Sweety. lol fronya

[Hidden]

I took this from the Dystonia Society website, I know it is of no practical usage, but it may help to explain why you have the pain and perhaps indicate how to go forward in the management of it with help from your doctor.

I am sorry to read of your pain, I hope by some way that it can be controlled.

Best Wishes.

Parkinson’s disease and dystonia

Parkinson's disease is a neurological movement disorder with a wide range of symptoms including slowness of movement, rigidity of muscles, memory impairment and others. Both Parkinson’s disease and dystonia can arise in the same person because they seem to originate in the same part of the brain: the basal ganglia. Sometimes symptoms similar to Parkinson’s disease (parkinsonism) arise together with dystonia due to a genetic defect as in the rare condition, x-linked dystonia parkinsonism.

However, the most common cause of dystonia in Parkinson’s patients is a secondary dystonia arising from the effect of treating Parkinson’s disease using the medication, Levodopa.

Levodopa is a chemical that converts into dopamine, a chemical messenger in the brain. It is a shortage of dopamine that causes Parkinson’s and dopamine is also thought to play a role in dystonia although what exactly this role is has yet to be fully clarified. Curiously, dystonia is caused both when the effect of Levodopa is too strong and too weak. Off-period dystonia occurs when the effect is the Levodopa is wearing off and the symptoms include postural changes in the hands and feet and also in the neck. On-period dystonia happens when levodopa is at its most effective.

It is thought around a third of those on medication for Parkinson’s disease experience dystonia. As levodopa is so frequently used in treatment this will amount to many thousands of people. However, these conditions are so frequent that most doctors think of them as part of Parkinson's disease and they are not included in the Dystonia Society’s estimate of 70,000 people with dystonia.

[fronya69 in reply to Hidden]

owsod Thank u so much 4 ur info. i'm going 2 my movement disorder specialist, march 18th in Ohio @ the U of Toledo. I c the wonderful Dr.Lawemce Elmer, and his great nurse Noelle. He is going 2 check what is going on! I'll keep everyone informe. Now i can go die w/my pain under the the covers. Fronya

[Brooke]

Hi Hikoi

Don't let yourself get depressed. I tried Apokyn, and it did not work for me. They wanted me to keep trying using different strengths but I realized it was more trouble than it was worth. I had great expectations because they made it sound so wonderful. I realize that I am not going to waste my time, get stressed and bruised.. You will find something that will work for you. Don't give up, keep a positive attitude.

.

[isis6361]

The symptoms are dystonia which is muscle cramping and common in young onset Parkinson's. Anxiety prevents all drugs working even the pen jects. Dystonia and pain increases anxiety. Whether you have eaten loads of protein whether you are dehydrated all have an impact on how drugs work,

[fronya69 in reply to isis6361]

isis6361- I have been going 2 pain mgmt. at U of M in Ann Arbor, MI. My drs. have tried morphine ,just made me violently sick. Had 2 call 911. Had 2 give me an i.v. inback of ambulance of Zofran. when that didn't help, off i went 2 er 4 10hrs.Then we tried Butrans pain patch.Yeah right! Didn"t touch the pain.Then they put me on oxycotin. That also was a waste. i'm now back 2 where i was in the 1st. place.back on Percocet. It only last 2hrs. but the others didn't work even sec. Going 2 my pd. dr. on the18th of March. We'll see what happens.At my pd. drs. Thanx Fronya

[Kathleen]

you need to contact your Doctor and the Apokyn nurse

[fronya69 in reply to Kathleen]

nd my apokyn nurse, says let's up the dose or just keeping it! PLGGGGGGGGGGGGGG! Fronya

[froggatt55]

Hi Tronya69

Have you tried deep stretching exercises? I find these very helpful. I was diagnosed 2003 - firs symptoms at 18. I know it's hard but try and stay positive, do

the stretching and avoid, as much as you can, stress - which is a killer for us PwP

[fronya69 in reply to froggatt55]

LOVE UR INTERNET NAME! i have tried big therapy, reg. pt, came back so sore and so much pain. i have spinal stenous,degenerative disc. disease, and bulging discs. due a dr. that overdosed me w/sinemet and seraquel. Then i had to have a dbs installed, in 2006. I'm sol.

[Kadie57]

I had bad leg cramps then it moved to my arms, I use 100% lavendar oil and it works fast stopping the cramps for me. Also there is a leg relaxing cream Sold by Norex that works also on cramps, price at 30.00 a tube can be bought at home parties or a consultant.

[fronya69 in reply to Kadie57]

at this point i'll try anything .Do u have a number i can call to talk 2 a rep? this wood b muchlky appreciated. Fronya

[fronya69 in reply to Kadie57]

Katie- now i remember who suggested it..YOU!!! Do u have a phone no.? Please and thanx.

[mistydog1]

Stretching with yoga and massages may help if not at least you gave yourself some well deserve pampering.

[quirkyme]

Stretching and physical therapy may help.

A member of PD group and my husband had serious lower leg cramps ('Charlie horse') now helped

totally by stretching. Muscle, ligaments, tendons can tighten with PD and our 'work' is to keep stretching.

Also, cold makes muscles (all three) tighten. Also look into the calcium/magnesium balance. If you get huge

calcium pills and not enough magnesium, you can get cramps. Please keep us informed.

[SGHALDIA in reply to quirkyme]

You are correct Quirkyme, I strongly believe that PD is related to magnesium and Folic acid deficiency, please take foods rich in magnesium and folic acid. regards

[fronya69 in reply to quirkyme]

my pain mgmt. dr. who has again run out of ideas(. I'm just about 2 give up to this nasty disease.) So he gave me an order 4 pt. the first time they hurt me, im gonna hurt them back. Last time i had pt, i hurt 4 3 daze. But i'm going 2 give it one more try. Keep nur fingers crossed! Fronya

[Kadie57]

first try drink 6 8 oz glasses of water a day, cramps are cause by not being hydrated, then do you have a health food store close they usually have oils.. I m also 56 and had pd for 12 yrs .. I live in Wisconsin USA and can help you find oils. Try on the web search Natural oils see what pops up. Good luck it is hard to function when in pain. ((HUGS))

[fronya69 in reply to Kadie57]

Kadie- thanx so much 4 ur support! I just ordered some theapy lavender 100% pure. I'll try this then on 2 leg relaxing cream by norex. only part is i haven't been able 2 find the comp. to purchase it. Have u heard nof it? BIGGEST HUG!!!

[Kadie57 in reply to fronya69]

I m so happy for you I can't to hear if it helped!!, Best of everything for you it is time to take your life back!! Thanks for the hug !! ((HUGS)) try Norwex.com it should come up. I want to be sure for out HealthUnlocked that they know this post is for info only I m not selling, just telling what I use for my cramps.

[rons]

Around a week after I started using the apo sub cutaneous pump in November I got strange twinned in my left hand this spread to my arm my neck and my shoulders. I am sure this is dystonia but my consultant doesn't she thinks it's nerve damage caused by involuntary movements of my neck. It be a bit of that. Problem is I'm on eight stalevo 125s a day and the dyskinsia is getting bad. As are the dips between doses. Continuous apo was meant to sort this out. I can only see ahead dbs or dodopa . oh yes I stopped the apo. The neck and arm pain is getting worse and getting sick and tired of this whole pd thing.

[fronya69 in reply to rons]

JOIN THE CROWD,RONS

[rons in reply to fronya69]

I know you know the pain too. Good news though cos tonight .I feel a bit less in pain I feel a bit stoned for no reason but hey people pay good money for that

[trishie]

I take magnesium for. Cramp...take 3 capsules twice a day. Was told to start with 2 and increse until cramp is under control

[Spideaux]

i had cramps at night after going to sleep. My friend suggested tonic water. I drink about 8 oz before bed it does away with the cramps. i if wake up later with cramps i drink another tonic water. I found standing and walking when a cramp occures gets rid of it.

[Atlantic]

Yes, sometimes I have pain,moe at rest.. no medication yet. I am 67 yrs old. Not sure what I have.. Think it's pd without tremor

[fronya69 in reply to Atlantic]

Atlantic, u need to get a referral to find a neurologist close to u and get urself checked out!! And don't wait. u need to c whats going on. keep us informed. God speed, Fronya

[quirkyme]

Folic acid /Vitamin B12 are involved in spina bifida, a defect in the spine where the flesh doesn't close over the spinal cord. It's related to Folic acid deficiency. Medical people have known this since the 1930s. Are there nutritional deficiencies in utero that predispose someone later to get PD, in combination with other factors. I always wonder about this. My husband's mother had several miscarriages and one still birth before he was born. I wouldn't be surprised if that played into his getting PD.

[michaela13]

Sometimes at night I will get horrible cramping in my leg. I never had it before and I know it's from the med (sinimet). My first thought was to stand up. As soon as I put all my weight on a flat foot, the pain stops. Could you try some sort of pressure? Maybe that may help.

[fronya69 in reply to michaela13]

Hi Michela13- i get the most aweful cramping only in the backs from my buttox to he back of my knees. i went 2 pain mgmt. They barley new anything about p,d. they could not find a drug 2 help my pain. Some help huh? I do believe my is dystonia. im getting ready 2 research it in a few mins. Talk 2 ur movement disorder. Ask him if it b from p.d. My family dr. had me go off my Lipitor,4 10 days. nope that wasn't it.mButt m not giving up. I have a lot of research to go thru. wish me luck. Fronya michigan

[marion11005 in reply to fronya69]

I've heard some people use epsom salts (magnesium) dissolved in their bath water for cramping--or even a magnesium oil spray for cramping--they spray it on the affected area and rub it in. It's not really oil as it is water based and absorbs completely. You can buy it or make your own. It also can be taken as a oral supplement but absorbs well and quickly through the skin. If you research magnesium, you will find it specifically relaxes muscles. Here is one link: empoweredsustenance.com/mag...

[SSRJ in reply to michaela13]

My dad gets terrible, terrible cramps in his feet but it's difficult for him to move, standing up will be a problem. So happy to have found this site. A lot of symptoms you guys are experiencing also happens to my dad. Wish they could find a cure for PD.

[Bobbyzee2]

I'm 57, did a clinical trial, had DBS, and I have tried Apokyl. In the words of the immortal Jimmy Valvano. "Don't give up, Don't ever give up". When I fall and when I do get back up...I look at myself in the mirror, and I smile. For that I know I'm not a quitter, and smile mean I won. Live long and we will make it together.

Bobbyzee