Similar To Parkinson's

[harp1]

Someone asked me to post this. 6 years ago I had onset of Parkinson's symptoms, extreme peripheral neuropathy in my hands. Very stiff with tremor, delayed gate in walking. I'm a harpist as you have guessed so I got really scarred about working. The docs decided it wasn't Parkinsons. I had a liver incident (food poisoning) that contributed . Also i had been on a Weight Watchers diet minus the wheat (I didn't know what i was doing-got alot of wheat in less obvious ways), I had lost 18 pounds in 9 months when this happened.

So I eliminated wheat, soy and dairy and started a Parkinson's diet - alot of protein, steak and fish. It became clear the tremor got worse when I had wheat, soy, dairy almost immediately. It would take 3 weeks for it to clear my body. I would know I was clear - my hands would stop shaking. Unbearable DH for years which is almost gone. Lots of stories I won't go into of playing gigs -weddings,etc and not knowing if my hands would respond and when they would stop working - hopefully the reception would only last one hour. I religiously stayed on the diet.

6 years later my right index finger is the only problem. Now I'm told that all my problems with my hands are all related to my thyroid. I agree. I accidentally stopped my thyroid for 2 weeks in summer '08 - still trying to catch back up - I have reverse thyroid, I'm taking compounded T3 and levoxyl. I went thru a period of anal fissures which is now gone

Now taking B 12 shots and magnesium shots. B12 really helps me for almost 2 weeks (I've read others posts happily). The magnesium only works for one day for the tremors. It seems the tremor is getting worse. At least I can now play the harp and piano successfully without cramping and stiffness -very, very VERY excitimg. The endochrinologit tells me the diet will solve the tremor and neuropathy.

I've recently begun cranial sacrall work (open up the bones of the skull) to improve nerve supply - it's really helping WOW

Also considering taking Brain States - a way to work on the brain by observing it - similar to biofeedback but very different - as a way to handle the tremor www.brainbalancetech.com

I take lots of supplements for the nerves, extra B1 for the nerves, Formula 303, hylauronic acid,l-glutamine

also Daily One multi

Mag. Oxide

Cal. Citrate

Fiber Perfect

Omega 3/6/9

Super L Lysine

Vit D

DHEA

Doxipen for DH and sleep and nerves

BTW i sleep like a baby all the time. I take Doxipen and formula 303 before bed

Feel free to ask me questions. I have a brilliant nutritrionist . I'm so much better

[Nancym]

You are very lucky! My sister's friend has something similar to Parkinson's and it is very far progressed. I wish they'd try dietary changes but I'm sure they'd think I'm nuts.

There's a neurologist with a blog I like to read who writes about gluten at times, but his real passion is writing about disturbed glucose metabolism in the brain. He's found that ketones (which are easily created from medium chain triglyceride oil) is doing wonders for people suffering from certain problems. He has a good book too!

Open Original Shared Link

[harp1]

Wow, I'll look at the website. I forgot to mention - my stiffness was described as "tendon tightness" and the tremor is a result of a tendon tightness. I did alot of yoga as recommended and sometimes my symptoms would disappear - the tightness in my hands is/was a reflection of tightness in my whole body. Susan

[RiceGuy]

So glad you've found some things that help! The one thing which does surprise me however, is the L-Glutamine. That's the main form of glutamic acid in MSG, which is a known neurotoxin. But to date, I've yet to verify the effects of swallowing it verses having it get into the blood stream via the soft tissues in the mouth, which is how it works as a flavor enhancer. There are some supposed benefits to the intestine, but last I looked, info on this was a bit sketchier than I'd like in order to really know for certain one way or another. Can you elaborate on what it is supposed to do, and how well it has worked for you?

[harp1]

I'm taking the l-glutamine for nerve stabilization. That's all I know. It really made me constipated so I stopped interestingly enough now that you mention it. Susan

[Eric-C]

Susan,

Glad to hear that things are improving for you.

I went through an abbreviated and much less severe version of what you did. About 7 years ago I had a very bad flu and went to the emergency room. They gave me two shots, one to calm my stomach and one antibiotic.

I had this tendon tightness, and I was going cuckoo too...amazing level of anxiety, racing mind...I literally, with a 101 degree fever, drove around for 6 hours in a car because I couldn't sit in the house.

I just thought I had a very odd and bad reaction to the medication. Now I know it was tied to Celiac's.

Three years ago I took Cipro for a UTI. I had the same reaction, x10...My arms would not stop shaking, the muscles in my neck were so tight they'd almost snap, same with my calves. I had tremors in my hands/arms and legs. The muscles in my neck would vibrate anytime I closed my eyes. I had anxiety and everything else under the sun for close to six months I was like this. It took nearly a year for the tremors in my hands to stop completely.

I was lucky in that it all went away when I removed gluten. I was so bad off I can't even image it right now.

Essesntial Tremor runs in my family and I've had it on and off since I was five. My sister has it, my dad has it, my neice,one of my nephews...it was never a problem because it was so infrequent there was so few times where the need to do something precise, and having a ET episode coincided with one another.

My father has it much worse, he can't write his name, but its something more than ET...I have it and I don't know how to describe it. I've typed since I was 4. If I write more than a sentence my arm muscles stiffen and my writing goes to crap. My dad and my sister are the same way. It was never an issue for me because I never write. My sister however it was a bigger deal for.

In all my research looking for a fix, this was before I removed gluten from my diet, I had good success with flax seed. I don't take it now but when I was still having gluten my problems greatly subsided. I told my sister about it and after 2 weeks on 2tbsp a day of flax seed she could write her name, legibly, for the first time in 20 years.

Its amazing reading all this stuff because in relating all my problems I had and my recovery I looked into ketones and all the rest as a helper to recovery.

I was 95 percent normal the final 5 percent, which now after feeling the way I did 10 years ago I might call the final 50 percent was B12 and D3.

I don't know if its my age(36) or what but I went from being so far down to feeling completely normal. I went months without sleeping, the shaking and everything else was unbearable. The muscle tension was constant...I never relaxed for six months.

I'm forgetting half the stuff...The Cipro is what did it and now I think I know why. Antibiotics damage the intestine just as a matter of how they work. I was already most of the way there from Celiac's and the Cipro pushed me over the edge. I healed even though I continued to have gluten but just at a very slow rate.

Good luck and I relate a lot to what you said in your post, I thought I was on my way to Parkinsons myself since the rate of Parkinsons is so much higher in people with ET. My symptoms now however that I step back are purely related to gluten. My sister is going to try gluten free too and see if it improves her situation.