No Longer Have PD.

[billPD]

On 13 FEB 2023, i was re-diagnosed. I no longer have PD. Instead, I have PLS (Primary Lateral Sclerosis. The end game is still the same but so far the muscle tighness has gotten better. Since the diagnosis, i have weaned myself from Rytary and have been prescribed Baclofen. The symptoms of PLS have not changed for me - slight tremor, weakness, freezing and inability to move. I had been referred to another Neurologist specializing in PLS after my PD medication appeared to have lost its efficacy. I am Now 59 and the symptoms started in 2016. i was diagnosed with "Parkinsonism" in 2018.

[Smittybear7]

What changed the diagnosis,? I was diagnosed in 2017 with Parkinsonism. Started on Sinemet in October of 2021.I was also having issues with my back and muscle cramping when I sat. I also saw a rehab specialist who detected some spacisity and put me on baclofen. I was diagnosed with osteoarthritis and stenosis. I went through PT and OT for about 7 months. I was having issues with gas bloating and constipation and discomfort on my right side. That led to a dexa scan and CT. Diagnosed with compression fracture L2 and osteoporosis.I asked the movement specialist if I could have something other than Parkinson's and she said no since Sinemet was helping the symptoms. Would like to know what you symptoms are and how your new diagnosis is being treated. Thanks

[billPD in reply to Smittybear7]

i have severe weakness and slight trembling in the arms. leg freeze. i move like Muhamed Ali in his later years. right now i am on baclofen only. this road just started so more to follow.

[Smittybear7 in reply to billPD]

Thanks for sharing. Good luck! I hope that you find the right treatment and get on the road to good health. I'll be interested in hearing more information about what you are going through. Take care!

[SilentEchoes in reply to billPD]

The trembling might be more a result of muscle fatigue. Have you had NCS/EMG?

[billPD in reply to SilentEchoes]

no sir. dont know what NCS/EMG is.

[SilentEchoes in reply to billPD]

Nerve Conduction Study and Electromyography. These test your peripheral nerves and can rule out or confirm nervous system conditions. A neurologist will order these tests.

With a diagnosis of PLS, a form of motor neuron disease on the ALS/FTD spectrum, it's pretty much a given to get NCS/EMG testing. They need to get it right, you deserve that much from them.

SE

🙋‍♀️

(I don't do pronouns

[billPD in reply to Smittybear7]

sinemet and rytary and mucuna appeared to help my symptoms as well. it was when it did not when i was diagnosed.

[Stillstandingstill]

Thank you for sharing. There seem to be many more conditions that can appear to be Parkinson's/Parkinsonism than the usual conditions cited (PSP, CBD and MSA). Glad you are on more appropriate medication now. Best wishes.

[billPD in reply to Stillstandingstill]

thanks.

[Despe]

I never heard of PLS, only ALS. Is it the same?

[billPD in reply to Despe]

related but not the same.

[rescuema]

I suggest you look into the possibility of bioavailable copper deficiency. Although I recommend that you start with HTMA to check your mineral levels first, you can try raw cod liver oil (with natural retinol and D) along with copper separated from the rest of your supplements to ensure that it's not getting blocked by other minerals. Although it'd depend on your NA/K ratio, be sure you supplement copper:zinc at around 1:8 ratio or you could possibly cause a deficiency of one due to imbalance.

See a case of an advanced systemic sclerosis below -

cureus.com/articles/63217-c...

[Smittybear7 in reply to rescuema]

What is HTMA?

[rescuema in reply to Smittybear7]

Hair Tissue Mineral Analysis. I use Trace Elements lab.

[Smittybear7 in reply to rescuema]

Have you ever heard of a Ola scan?If so have you ever used it?

[rescuema in reply to Smittybear7]

Never heard of it.

[Smittybear7 in reply to rescuema]

Thanks for your help!

[Rather in reply to Smittybear7]

quackwatch.org/related/hair-2/

[Smittybear7 in reply to Rather]

Very interesting. Thanks for sharing.

[rescuema in reply to Rather]

kendraperry.net/is-hair-tis...

[beehive23 in reply to rescuema]

be sure you rule out wilsons disease before supping with copper....hang tough

[rescuema in reply to beehive23]

People with Wilson's disease are diagnosed relatively young as in Menkes disease so that possibility wouldn't apply to most people under this forum. Most people are actually copper toxic (in tissue/organ storage) that end up deficient in bioavailable copper with depressed ceruloplasmin activity. Past/current vegans and vegetarians often fall into this category. Restoring the Cu-dependent enzyme functions does require a delicate balancing of minerals/vitamins including copper intake separated from other supplements that tend to block its absorption.

Widespread Decreases in Cerebral Copper Are Common to Parkinson's Disease Dementia and Alzheimer's Disease Dementia

frontiersin.org/articles/10...

[kevowpd]

This should be required reading for anyone that is convinced that a response (or a perceived response) to CL means you certainly have PD. Persuasive evidence, yes, but not conclusive.

[slimweiss]

my husbands Parkinson’s diagnosis might change too. He’s having a brain MRI to see if he has Lewy Body disease. Not good news. His meds (Sinemet, then Rytary, and now back to Sinemet ) aren’t working too well. He seems to have all the symptoms of LBD. It could also be MSA. I’ve never heard of PLS. It wasn’t in the doctor's summary- only LBD and MSA. He was first diagnosed in 2019 and the first neuro said he didn’t have PD. Maybe she was right.

[billPD in reply to slimweiss]

my initial symptom was my calves were extremely tight to the point they were painful and cramping.

[slimweiss in reply to billPD]

my husbands symptoms were loss of smell decades before diagnosis and then weakness in left hand, curling left arm and then it all went downhill from there 4 years after diagnosis. Multiple falls leading to a fractured vertebrae and then a face plant requireing stitches in three places on his face. His quick decline is why the doctor doesn’t think he has PD.

[billPD in reply to slimweiss]

i have a loss of smell and once it declined, it was like overnight.

[mhberman]

give consideration to using a combination of infrared photobiomodulation and brainwave biofeedback to stop neuronal degeneration increase new neuron growth and synaptic activity. See quietmindfdn.org for details. or neuronic.online

[dkdc]

mayoclinic.org/diseases-con...

[Despe in reply to dkdc]

Symptoms overlap with PD except the tremor.

[MarionP]

Very interesting indeed.

[rescuema]

I agree proper homeostasis of manganese is very important, as it contributes to the proper folding and activation of ceruloplasmin among other benefits, and both the deficiency and toxicity of the metal could result in impaired metabolism. The tricky thing with most essential minerals is that too much or too little will both contribute to enzymatic dysfunctions resulting in similar disease manifestations. Because blood is so homeostatic and binding proteins remove toxic offenders rather quickly into storage to keep you alive, the serum tests are almost always inaccurate except in very recent exposures. This is why HTMA despite its shortcomings tends to be one of the best and most affordable tools to reveal/address various minerals balance and toxins in the body.

See below for more on manganese.

healthline.com/nutrition/ma...

[rescuema]

What you've noticed is a typical experience. The value of HTMA is in fixing the mineral balance patterns and adrenal functions because metals with strong binding capacity such as copper, iron, manganese, etc will often register extremely low levels on HTMA while an individual may be highly tissue toxic, so experienced trained interpretation based on patient symptoms is a must. You often see the metal levels rise when they're finally mobilized on subsequent testings when the enzyme activities get restored for ensued detox. Deficient bioavailable copper is often at the root of most issues cascading down to various enzymatic dysfunctions that can lead to a toxic build-up of other metals (including manganese), iron metabolism dysfunctions that also lead to vitamin A accumulating in the liver (causes functional retinol deficiency, vision loss, etc), which also can cause further negative feedback on ferroxidases enzyme activities due to the liver burden. Yes, it is a complicated matter, and often the gut issues are also because of depressed ceruloplasmin activity.

[OLS3010 in reply to rescuema]

what have you found as the best way to improve copper deficiency?

[rescuema in reply to OLS3010]

At the very basics, you need to separate the copper from the rest of your supplementation as I've indicated in the first response under this post. I would add natural retinol via raw cod liver oil for just enough cofactor with Cu in case of functional A deficiency. I've been talking about the importance of copper and zinc for years under this forum and my first post on HU was on the topic during the start of Covid. See the related response below for the excellent article on copper and the importance of proper ratios.

healthunlocked.com/cure-par...

However, I found just keeping to the ratio wasn't enough, and you need to separate copper because the rest of the minerals compete and block the absorption of copper. Many popular supplements on this forum (TUDCA, B3, ascorbic acid, curcumin, etc) also deplete copper as I've experienced myself, as could glyphosate (if you don't eat all organic) that chelates copper. Although this subject gets extremely complex, if your HTMA Na/K ratio is less than 2.5, you need an increase in the copper, but when above 2.5, you need to increase zinc proportionately. You need to supplement some copper to get the cu-dependent enzymes working again but fixing copper toxicity/bioavailable deficiency isn't an easy road so I suggest you seek out a good naturopath although this may be a challenge in itself.