Glad to join the group

[June2020]

Hi, has anyone ever had heavy,heavy legs?I mean like the front,and back,from the knees down,like you have 40#bags on each leg?All my tests came out ,but no one seems to know about this.So [ though maybe one of you might be able to help me?Thanks so much,Kate2020

[Juliegrace]

When I am transitioning to an off phase (I don't take meds at night) I have the feeling that my limbs are very heavy. It goes along with the rigidity and slowness.

[TheLordsWeapon]

have that sensation in the legs alll the time, started about 6 months ago, can barely drag my body through the market when shopping or walk to my car,very annoying

[glenandgerry in reply to TheLordsWeapon]

My husband (PWP) is the same. He's had 'collapsing' legs for several years. Sinemet seems to help a little - sometimes, but not always.....it's very unpredictable. Consequently when we travel or go to places where there may not be seating, he has to take a wheelchair. He was diagnosed nearly 15 years ago.

[June2020 in reply to glenandgerry]

Nice reply,I have just started Sinemet this week,i also hope it works.I have only 5 yrs since being diagnosed. I am seeing a dr. about my spine soon. I am wondering if your husband has taken B -1? I see many people mention it a lot in there responses. Please say HI to your persevering husband. Thanks June 2020

[glenandgerry in reply to June2020]

Thanks June. Yes my husband has been taking B1 for nearly 3 years. I don't know if we've achieved the correct dose yet as I have adjusted it several times but he's not very in touch with his body and I don't get much feedback from him.

What is wrong with your spine?

My husband has had a problem with his spine, and pain for around 6 or 7 years. He was diagnosed with spinal stenosis and has had about 5 spinal injections, only one of which was any help.

Last year he had a spinal op which we thought would be the answer to his ever increasing back pain (also causing pain in his thighs, down his legs and in his ankles) but if anything, it made things worse due to the scar tissue. There's nothing more that can be done for him surgically - he's now under the guidance of the Pain management team.

He suffers with osteoarthritis and has total knee joint replacements on both knees.

[June2020 in reply to glenandgerry]

Nice to here from you! I am going to try the B-1 ,hopefully their will be some left on the shelf! Some of my disks are fused to.,gether, and i have a narrowing ,I almost said yes to invasive spine operation ,however.i feel i need to keep looking more. So i now have a appointment ,to see about a injection.Looks like i am going down the same rd.as your husband! I also have spinal stenosis, and have had 2 knee replacements,which is the best thing i ever did. What a relief .I am not giving on these legs!!!! JUNE 2020

[justhavefun2]

Before I started medication, I was standing in the grocery line and every pound on my body was weighing me down. It was like I had gained an extra 100 pounds. Thankfully, now that I’m on medication, I very rarely feel like that anymore.

[June2020 in reply to justhavefun2]

Hay,where are you?I am happy that you are feeling good with your medication! I just started taking Carbidopa-Levodopa to replace my pramipexole which i had no problems with .Do you also take B-1 .and what is a good mg to start with?I am hopeful you will answer me.seeing that the new guy got 52 posts !!! Thanks JUNE 2020

[justhavefun2 in reply to June2020]

I have been taking B-1 for about a year and a half? I won’t ever not take it because without it I have absolutely zero energy. I ran out once and I couldn’t get my husband to open the bottle fast enough! I take 2000 mg a day split into two doses. I am not the expert on B1 so please refer to Art on this website. I am sure he will be happy to fill you in on the details. He has been excellent in polling people, progress, etc.

I live in Washington state where the covid19 outbreak started in the US. It is funny to me how focused and concerned I was about Parkinson’s until we are now, essentially, having our lives turned upside down by the stupid virus. So, my attention has been elsewhere and I apologize.

Sometimes I just pop in and check what’s going on with everybody else and don’t even comment unless I have something worthwhile to contribute.

June2020, what part of the world do you live in?

[chartist in reply to June2020]

June2020,

Welcome to the forum!

Here are a couple of links to info about HDT/B-1. The first link takes you to a page where forum members describe how they dose their B-1. A quick word about dosing, forum members have reported their effective dose range anywhere from 25 mg/day up to 4,000 mg/day and it is not always easy to find the best dose for you! Here is that link :

healthunlocked.com/parkinso...

This next link gives a very significant amount of information about everything HDT/B-1 including a FAQ page that answers 58 of the most frequently asked questions regarding HDT/B-1 and all answers are directly from Dr. Costantini, the founder of the protocol, known side effects , 80 symptom improvements that have been reported by individual forum members who are testing or using HDT/B-1.

Here is that link:

healthunlocked.com/parkinso...

Good reading and good luck!

Art

[June2020]

To justhavefun2 Thank all of you for your replys.However would you mind shairing with me what is the medication that is working for you?I am new at this.Thanks June2020

[Sapeye2020]

I copied this from another post I did this morning , not directly answering your Quiry but addresses overnight meds and more.

____________________________________________________________________________________________________

Remember that Dopamine is the missing compound in Parkinson's Disease

. Google Dopamine:

"Dopamine is a chemical found naturally in the human body. It is a neurotransmitter, meaning it sends signals from the body to the brain. Dopamine plays a part in controlling the movements a person makes, as well as their emotional responses. The right balance of dopamine is vital for both physical and mental well being.Jan 17, 2018"

___________________________________________________________________________________________________

You really need to keep a close watch on your jitters and what you ate and how long it takes for the shakes to start... ( PROTEIN is everywhere in our regular diet) , and, as well, you have to monitor the time from medication to when the jitters stop! if you medicate near your normal eating times you will have to wait till the protein has been through the stomach so that you Dopamine does NOT get second shrift and not properly/fully moved into the blood stream. Your gut has its own rhythm. If you can start medicating every day at the same time it is much easier to stay on track. I have an issue with stopping if I am in the middle of a project that i want to get done, like cutting the grass, and I will keep going and suddenly I'm an hour, or more, late.... My jitters are not severe so I pop an IR 25/100 Sinamet or a 1/2 tab if caught early enough... and then the CR version that takes 2 hours to peak..

My Neuro is all hepped up on gut health and if you suffer from constipation because the dopamine can be bound up and your body is not getting /utilizing all the drug you took that day.

I decided to lower my overnight dosage and the Neuro got me to take it as she explained just because you are not awake and expending energy doesn't mean your bran does not need less drug in the blood stream. Be cautious if you do. Keep complete records to support your impressions.

Yes the heavy legs are part of PD and fluctuations in dopamine levels... comes and goes.