I was wondering, if anyone has pd symptoms way before they were diagnosed. Iv seen 2 neurologist but no one will say what I have .I'm in serve pain, burning, tightness electric shocks, muscle weakness and spasms. I'm mostly in bed because I don't have the strength in my muscle to sit up long enough. No one will take me seriously. And now I'm unable to travelto see a sspecialist. It's been like this for 2years and it just keeps getting worse. I'm helpless .however because pd has no cure, does it matter that I get a diagnosis.
I'm 37 women undiagnosed, but have all s... - Cure Parkinson's
I'm 37 women undiagnosed, but have all symptoms of pd .trying doma mucuna supplement. I noticed it helped within 30mins.
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Nichole1133
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If your symptoms are subsiding with Mucuna there are a lot of chances that you may have PD.
Thankyou for your reply. It's hard because I know my body is getting worse, but I can't get any treatment or diagnosis. I'm on alot of pain medication and nerve pain and muscle relaxation medication this is also for my chronic Migraine. But I'm just feel helpless sometimes.
you should start at least some basic supplements for example vitamin D, B1 and Magnesium. PD and similar diseases cause the depletion of these supplements in the body. Regular walk is also good for overall health improvement as well as reduction in stress and anxiety
Thankyou , I do take b12 melts , Magnesium when needed . I'm unable to very far . I'm currently using a mobility scooter, wheelchair or wheelie walker to get around. It's happed all very fast .
High-dose thiamine, also known as vitamin B1, has helped many of us. Dosing instructions at the link. Allow four months for full effect:
healthunlocked.com/cure-par...
A good source of thiamine HCl is here:
Have you tried vitamin D too?
This happened to me. I had a number of urinary track infection. and a lime disease. Have you checked them?
Hi. PD doesn't have a cure but you can do things to slow it down. At this point, I would make an appt. with a movement disorder specialist. They specialize in this type thing and will get you headed in the right direction. You may be taking things that are interacting with each other and making things worse. A proper diagnosis will help a lot.
Take care and hope you find some relief! Keep fighting!🥊
Hi thanks for your reply.
I agree completely. Make an appointment with a Movement Disorder Specialist. Even if it is a distance to travel, an MDS can make a big difference in your care and treatment. My husband only saw his twice a year unless he developed a new issue.
Thanks . I just looked though my old emails I have a hospital neurological/neurosurgeon booking system email address. I just emailed them to get a video link appointment. Fingers crossed they can help. I give up sometimes it's been a long road of unknowns and rude doctors and nurses.
I understand. But stay strong and refuse to be dismissed. Get the care you need for the best outcome.
Thank you , very much. 🦋
Are you sure you don’t have neuropathy? What tests have you had?
I had a nerve conduction test , he said all good , no peripheral neuropathy .iv had so many blood test, MRI BRAIN, . I have home video footage of my muscle spasm attacks ect. Iv had the same gp for over 8 years now , so she's seen me when I was fully able to how I am now . But because I live not in city. The specialist are 4 hours away, there is no way I can handle a drive like that . I'm just lucky now to get to the corner shop .
I have a few questions please. Your symptoms, serious as they are, don't sound like the classic PD symptoms. I mean, PD has plenty of symptoms but severe pain, burning, tightness electric shocks, muscle weakness and spasms are not the classic hallmarks of PD. All of these could be from PD, but they could be from other things also (I am not a doctor, don't have a college degree, and have not been diagnosed with PD).
Q1: How long has it been since you saw a neurologist? You said this is coming on fast, but now you can't travel to see a specialist, so that makes me think it has been a while since you saw a neurologist. I think the first step really is to get a professional diagnosis. Maybe you can get a telemedicine appointment?
Q2: What other symptoms are you experiencing?
I would not put too much faith in the Mucana as a diagnostic tool. I guess it depends on how much it helps. There could be a placebo effect. I hope you can get a professional opinion. I am praying for you Nicole.
I have sarcoidosis as well . And narcolepsy. I was working first when I started to get back pain , than I got really sick , than there discovered sarcoidosis. After that 2 years later I started get weakness in my neck and in my legs as well as extreme fatigue, had lumbar puncture, results were mid level orexin levels, which means I have narcolepsy but I'm mid range which is related to a neurological disorders , I recovered from lumbar puncture. Than all of a sudden my legs got weaker and weaker, my muscle spasm, feet burning. After months I seen neurologist, he said nothing wrong with me , that was over a telelhethealth video link. So I found another neurologist 2 hours away. He said I do have problems, but I can't find the sauce, so we will treat your symptoms, listed medications and that was it. It's hard to find a specialist to spend time with you .
I guess I haven't thought of smell , I went to the candle shop dusks and couldn't smell the candles but didn't take any notice. My lips twitche alot , my jaw gets super tight . And I'm having trouble with my saliva, it's embarrassing to talk about .
I also drool
I drool as well . I have bladder weakness and bowel problems/constipation.
Consider neurosarcoidosis pubmed.ncbi.nlm.nih.gov/324...
I move like slowly like a snail , I lean over one side and my muscle tend to cramp up . It feels like it's pulling. My legs always feel heavy. I find it hard to write , brush my hair, brush my teeth ect. If I use my hand , thr kids will say mum why are u shaking, I won't even notice. I feel like internally I'm vibrating some times. That's when I feel my worst. I feel like my body is like over loaded or something.
I am so sorry. That is a full load of symptoms. I hope there is some way you can find a doctor that can treat you. A lot of people like using Mucana, but there are different versions and tricks to it and you should not HAVE to use Mucana just because you can't get a diagnosis.
You might want to read this post. It is my stack and a lot of other people's stacks also (lists of what we take): healthunlocked.com/cure-par...
It doesn’t sound like PD to me, but I’m not a Dr. and I appreciate everyone is different.PD usually starts on one side, arms stop swinging and sense of smell reduces. Then you either have tremors or muscle stiffness and slow movements. Yours sounds more nerve related.
Magnesium might help, but you really need to see a medical professional. Can you do phone consultations where you live?
Also iv just noticed that my legs and feet are getting more cramping and so painful to walk on . I was going to try acupuncture but not advised due to Unstable when I sit up right and one side always seen to lean over and bobbles around up and down .
Ask your doctor about small fiber neuropathy, nerve tests are usually normal
Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2024. Testing — mice, open label, double blind — has been going on since 2010 and it has been positive every time.
scienceofparkinsons.com/201...
According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to getting Bydureon.
cureparkinsons.org.uk/news/...
South Korean researchers have learned how to dial our cells back to stem cell stage -- and are now administering monkey stem cells to parts of their brains that are short on dopamine producing cells -- with the hope they will fill in and take over the job.
Started this before with stem cells from other monkeys and had some success I think until local immune systems attacked foreign cells.
So there is even realistic hope for a cure.
Can you list all medications you are and have been taking? And what is your diet like? Have you had blood tests?
Yes!!!! I was complaining to my primary doctor for two years about my tremors. My father had PD so I was always thinking I had it too. But my doctor kept telling me PD wasn’t hereditary. But it is!! I am a woman 73 and I was diagnosed this past March. Instantly put on Levadopa which does hide my tremors.
Thats the thing , some doctors have different views, but they should still check. Most of the time they go no , you dont check all the boxed on the list , it's not that then , nothing wrong with you, but we know there's something wrong with your bodies.
I am no doctor, but one way to figure out if its pd or not is to try sinemet.... Like the doctors do! If it works, its pd related disease. Your question answered. Get to a movement disorder doc who will consider giving it a try.
I asked my gp , but she said no , they only give it to server pd patients. Thanks anyway
your gp doesnt know what she's talking about. they give sinemet right away to help understand if it is pd and then continue it as a treatment from the beginning. get an appt over internet with a movement disorder specialist. maybe you have 2 separate conditions.
I do;’t think you are correct. Using Sinimet to diagnose PD is not widely accepted any more.
they do in my neck of the woods when your examination and other symptoms lead to that suspicion
Yes they may well do in your neck of the woods but they don’t in mine. This is a world wide forum based in the UK. I always think it dangerous when people make statements assuming what they do in their country (usually the USA) applies universally.
I do hope your statement was hyperbole. There's nothing dangerous about saying doctors have and do as ONE tool in their kit, use Sinemet when trying to diagnose someone with PD symptoms after a clinical exam. The Mayo clinic says it too, don't care which side of the pond you're on, people from all over the world go to them.
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mayoclinic.org/diseases-con...
"In addition to your examination, your health care provider may give you carbidopa-levodopa (Rytary, Sinemet, others), a Parkinson's disease medication. You must be given a sufficient dose to show the benefit, as low doses for a day or two aren't reliable. Significant improvement with this medication will often confirm your diagnosis of Parkinson's disease."
I was thinking of doing that , I just get sick of seeing specialist that have no idea about anything, they just say your very complicated, it's heart breaking for me at times .
I’ll send you some sinamet if you’d like. May not get through customs. I have left over from before they changed me to madapor.If you contact me thru chat I’ll organise.
Are you in USA?
Try B1 therapy…many have felt better and symptoms have been diminished. A book on Amazon discusses the therapy.“Parkinson’s and B1 Therapy” by Daphne Bryan
Yes, they don’t seem to like to diagnose it so young. It took about two years with hubby who was 44 when the first symptoms hit. Positive response to levodopa is one of the diagnostic points, that plus stiffness, tremor, etc.
He was also given an MRI but that might not be conclusive early on either. I’d probably also try the high dose thiamine regimen and see if that didn’t alleviate your symptoms completely.
I agree you should get to a movement disorder specialist when you can get in. Can you have someone bring you there?
Good luck! Hope it’s not PD but something you can cure.
You should have test for heavy metals toxicity. Actually we should all have such testing done and especially since they don't know what causes Parkinson's. And it is most likely toxin of one kind or another that contributes to all diseases.
Iv had all blood test in relation to toxins and mental ,virus and vitamin .
So, I assume that the tests showed no heavy metal toxicity. Is that right?
Can you list any medications you are on please?
Are your doctors certain that you don't have some type of peripheral nerve disorder? Your symptoms seem to point that way. Please advocate for yourself and insist on seeing a different neurologist. If you are that unwell, take a chance at the ER and maybe they will send you to a neurologist. Is there any kind of social service available to help you? Can you get pay someone to take you to a specialist? Doing nothing is not an option.
You need new doctors. Which country are you in? That info could help people suggest competent doctors.
Nichole. I’m sorry. Your symptoms sound terrible. They are not typical Parkinson’s symptoms, but then there can be a lot of variety.
I first went to a neurologist when I was 39 with some numbness. Neuro diagnosed me with B12 deficiency and I had shots, which helped things but not everything. I had a lot of strange feelings over time — mostly numbness on shin and arm. And I couldn’t rotate my right hand easily. I had an MRI and some other tests. Nothing. Approximately 7 years later, I went to a new neurologist. He performed his exam and knew instantly. Something that I hadn’t noticed was that my foot had been dragging. All my shoes had a worn spot in on the heel. And I was able to quantify that the movements on my right side were slower than the left.
I do take Sinemet and it helps. As others have said, the diagnosis doesn’t change much. Yeah, it’s nice to have a name for it. But everyone’s Parkinson’s is different.
Stress, lack of sleep, malaise — these things make my symptoms much worse.
I wanted to say that a “test for a virus or infection” — these are not easy tests. There are some crazy, rare things and only a specialist can request tests to find these rare things. Many of your symptoms sound like Lyme’s— it may not be Lyme’s but could be caused by some rare infection. I’m not a doctor.
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