Jump to content
helplinedonate
krfbmk

Worried I have early onset of Parkinsons..38M

Recommended Posts

Hey forum..

38 year old male here from Canada..
I have been struggling with some not so nice symptoms since February 15, 2016.  I will try my best not do give you an extremely long story, as I have noticed when people reach out for help it sometimes can lead to writing a novel, and I don't want to lose anyone because of an overly long post.

One morning I woke, and went to take a shower, and all of a sudden I was having a standing balance issue. Not dizzy, just unsteady. This has NEVER gone away, and it's with me all day.  I have been to a few hospitals and they all told me it was either vertigo or anxiety. After seeing my fam doctor she referred me to a neurologist, and I have also seen a internist doctor. The neuro was a joke and didn't even properly asses me. He started sending me for sleep studies, and after doing a few of them, it turned out that he actually attached my name to the wrong file, and I was doing tests that weren't even related to my symptoms. I asked to see a second neurologist and he told me from my symptoms that I explained to him it sounded like it could be stiff man's disease and or early onset of Parkinson's, but he didn't want to commit to an actual diagnoses, and said that the stiff mans disease would be one in a million. I had to debate with the neuro to even get an EMG, which is next week. It just feels like everyone is sweeping this under the rug and nobody is taking me too seriously. I don't do drugs, drink, and or smoke. I am straight edged and know when something is wrong with my body, and I'm in trouble.

Anyway, my symptoms are as follows, postural instability, but my walking is fine, although sometimes my leg on the left side gives out. Pins and needles down my legs, and sometimes in my face. Super cold feet, and sometimes hands. Still have strength, but I am also developing a small tremor throughout my whole body in both my hands and legs, but only when I make movements. I'm dropping things a lot, and becoming very clumsy. Cognitively I've taken a hit too, and I scramble for words, and sometimes get confused real easy. I have extreme stiffness in my shoulders (neck & shoulders) like a coat hanger, and sore joints in my elbows, and hip. I also get muscle twitches through my body, and sometimes they hurt too.  Did I mention too that I have a body itch that is unbearable at times? I have had MRI's in February, March, June, all for my head, neck, and spine, everything came back clear, but they did find some mild arthritis in my C7 spine, but they said this is normal, and in my lumbar spine they found a minor disc bulge and a small annular tear, but they said that these things would not be causing my symptoms. I have had tons of blood work, and no signs of infection, and no diabetes, my b12 levels were good also, and no thyroid issues.  Even as I type this I am feeling a weird sensation, almost like I know I am typing, but it kind of feels like my hands aren't my own. I also have tinnitus, sometimes blurred vision that comes and goes, and now blood pressure problems as well 155/101,  and honestly it just feels like my body is attacking myself, and my brain is frying. Sometimes my legs also feel very heavy.

I have no wife or kids, and not a lot of friends, and I feel like I am at the edge of my mental health, and the fact that this has been going on for over 8 months with no diagnoses, I'm getting scared now that I am slowly passing away.  I have spent thousands of dollars on eye tests, chiropractors, acupuncture, physio, and no relief.

Anyway, the reason I'm here on this forum is because is just to connect with people who may have idea of whats going on with me, and I would appreciate anyones opinion. I did just recently have a nerve conduction test, and a muscle test.  The doc came in and said that I don't have MS and or ALS. I asked her about the small intention tremor in my hands, and she said that it could be many things. She said that Parkinsons is one of those dieases that when someone comes into their office, they know right away that it's Parkinsons.  I just find it very hard to beleive that things need to get worse for them to make a diagnoses. I swear to god, if one more person says that what I am struggling with is Anxiety, I may just lose it on one of these doctors. She went on about how the body can put out more carbon dioxide when they are stressed.

 

I am isolating myself, and I'm more worried about becoming so sick, that I won't even be aware that I am sick..If that even makes any sense. I own a home and am now on LTD, but my finances are running out, and so is my energy.

And you know what? I wrote a novel..
Sorry

Please help...  :(

Share this post


Link to post
Share on other sites

Doesn't sound like Parkinson's disease to me.  Balance issues as you have described is not a normal onset symptom.  Tremor in PD is usually a rest tremor (not a tremor when making movements),   Muscle twitches and itchy skin are not common in PD.   I'm no doctor and I don't have a clue what you might have but it doesn't fit idiopathic PD.  Hope others will weigh in soon.  Good luck in getting a diagnosis.  Gardener

  • Like 2

Share this post


Link to post
Share on other sites

Are any of these neuros a movrment disorders specialist? That's who you need, and even if it is YOPD its not uncommom to be misdiagnised for years. Average is something like 3 or 4 years for men and even longer for women, with anxiety being a common misdiagnosis.

 

An standard EMG won't show PD. Its for large nerve pinches, etc like carpel tunnel.

 

During diagnosis, I had several because of legit orthopedic issues so Ive had both Standard and surface EMG's. The surface dorsnt involve needles. they used ekg leads on my limbs, and then I pointed and moved around. The test measures the shape and the speed of the tremor as the cause are unique. All three of mine are classic PD but are very fast at 7 hertz. Standard is 2 to 6, the younger the faster. There are 1800 to 2400 YOPD cases diagnosed every year, versus 50 to 60 thousand of older onset PD. It literally is a millions to one shot. If you do the math, its .000004% of the population on an annual basis. 25 years to find 60k of YOPD cases.

 

For me, YOPD was much more gradual until I hit the "can't take it anymore" wall. Postural presentation would be unusual in YOPD.

 

Im an unusual YO in that I have rest, action and intention tremors with rest being 80%. The tremor itself would normally be only on one side of the body, right or left. If its both arms, that's more indicative of essential tremor or the atypical parkinsonian syndromes.

 

If it were me, I'd first do a trial of PD meds. The meds are really indexpensive. If that was positive, I'd then do a DATscan. Easy for me to say, my insurance covered it as Im 41. Its the closest thing they've got for definitive dopamine loss. Cant argue with that picture when its positive. Its a horrible relief.

  • Like 1

Share this post


Link to post
Share on other sites

Oh, and the sleep study wasnt a joke on their part. Insomnia can be vicious. Its classified as torture for a reason snd may cause most of what you've got going on. Its also common in PD with unique sleep indicators, so it shoukd have been a two for one test from the docs perspective.

  • Like 1

Share this post


Link to post
Share on other sites

Krfbmk,

 

Can't give you a good answer. Your description of symptoms does not match the classic onset. Tremors are generally

resting tremors and begin on one side of the body. Stiffness is the same more one sided than the other. Your

description of cognition sounds like it but there are some other symptoms that don't match well. I hope they find

something or you find the correct doctor. This might be one of those cases where a DatScan might help.

 

I know when they Diagnosed me they gave me a DatScan because of my age and a few symptoms I had did not seem to fit the norm. After the scan was done they gave me the Diagnosis and we where able to move on.

 

Blessings and best of luck

Adam

Edited by adams234
  • Like 1

Share this post


Link to post
Share on other sites

I completely understand the anxiety & the fear no diagnosis can cause.  

 

My advice is; do everything in your power not to display just how anxious you are to the doctors; docs can't seem to "get" the fact that we're anxious because of our symptoms and no diagnosis and will keep writing off your symptoms as anxiety.  It is a very sad fact.  They figure you will come back when symptoms are more "diagnosable" and they won't waste  time on you now.  In the mean time, you will suffer with extreme anxiety and mental health issues.

 

Many neuro diseases are hard to diagnose.  

 

When explaining issues to doctors remember to try hard not to appear anxious, but explain all your symptoms in a concise, firm manner.  They will respond better to you and your chances of getting a timely diagnosis will be greater.  

 

You also may want to consider therapy for anxiety; a professional that you can talk freely to; receive support and gain insight on how to deal with this time.  You may have to "try" different ones until you "mesh" with one.

 

 

 

Good Luck to you.

Edited by ellaangel2
  • Like 2

Share this post


Link to post
Share on other sites

I also don't believe that you have PD. In my opinion, your symptoms sound more like Lyme Disease. Sudden onset; tingling in extremities; sore joints; cognitive issues; anxiety - these are all symptoms of neuro lyme.

  • Like 1

Share this post


Link to post
Share on other sites

I also don't believe that you have PD. In my opinion, your symptoms sound more like Lyme Disease. Sudden onset; tingling in extremities; sore joints; cognitive issues; anxiety - these are all symptoms of neuro lyme.

^^^ Yeah, that. Ask your doctor to test you for Lyme. If Patriot hadn't beaten me to it that was my first thought. That said, neither of us are doctors, so get a professional opinion.

  • Like 1

Share this post


Link to post
Share on other sites

I also don't believe that you have PD. In my opinion, your symptoms sound more like Lyme Disease. Sudden onset; tingling in extremities; sore joints; cognitive issues; anxiety - these are all symptoms of neuro lyme.

Yeah. That, and there's some other conditions that will cause parkinsons like symptomes. My Neuro did a full workup before PD diagnosis. Heavy metal poisioning, Wilsons Disease, MS. Edited by afroney
  • Like 1

Share this post


Link to post
Share on other sites

Krfbmk-

I'm so sorry you're sick and having difficulty getting doctors to take to you seriously, it's a really frustrating situation to be in. I hope you get answers soon.

 

Good luck

 

-fiesty

  • Like 1

Share this post


Link to post
Share on other sites

I'm so sorry for you my friend. You sound so hopeless. Please don't give up. There must be something that can be done for you, you just haven't found the proper help yet. Keep your chin up and pray like hell. I too don't believe you have pd. But lm no md. Looking back my early symptoms were bizarre dreams then left side "resting tremors". Balance issues much later. First thing after diagnosis was if medication helped "sinamet",it did! Keep at it you will get better. Gods speed for you

John

Share this post


Link to post
Share on other sites

I think many of us that have YOPD have had similar struggles getting an answer.  I spent years blaming my back because my back has a defect and PD was exacerbating the issue.  It was like a gremlin hiding in my spine.  The sciatica, then constipation, then loss of smell, then sciatica then foot drop, then stiff left arm with no swing, then very stiff neck and shoulders, then speech, then... blah blah blah.  I was literally checking off the PD list of symptoms and didn't know it.  I wanted to blame what I knew.   

 

Anyway, the doctors thought it was "in my head" after I went to the hospital when I couldn't walk one day.  A few days later, a Neuro said he could tell I had PD when he walked in the room.  in fact, that is the first thing he said.  I hope you don't go that far, but listing all your symptoms and past build up of issues, even you don't think they are related, will help you. If I had known to list it all, I can now see how they could have diagnosed me earlier. 

 

Hang in there, many of us have been there.  You will get an answer if you keep it up.  I hope you find an answer soon.

Share this post


Link to post
Share on other sites

^^^ Yeah, that. Ask your doctor to test you for Lyme. If Patriot hadn't beaten me to it that was my first thought. That said, neither of us are doctors, so get a professional opinion.

 

Lyme testing is often not correct. It's very hard to get a positive on the test because of the various forms the pathogen (any of several forms of the borrelia spirochete) can take that protects it testing:  when it escapes into a blood cell or forms a cyst around itself which prevents testing reaching it.  It is only when it is in its free form that it can possibly be diagnosed by the tests.

 

Check out Clongen Labs. Also received this recently from an RN studying a co-infection of Lyme which she and I and many people around the world have:

 

For a testing lab...I highly recommend IGeneX.  The blood can be drawn anywhere and it is sent to a lab to be processed. IGeneX recommends PCR for Borrelia bugdorferi as well as for relapsing fever spirochetes in addition to the the Western blots.  PCR can be done on scabs as well.  You would need to call them and have them send you a kit and then take the kit to any Lab who will draw the blood and fed-ex it to IGeneX.  

Regular labs are slowly--ever so slowly--catching up on these labs' more-updated testing methods which more often give a correct diagnosis of Lyme.

 

Just FYI.

Share this post


Link to post
Share on other sites

The Lyme Disease specialist that I see only sends blood to Igenex. Igenex is the reference lab for Lyme and is very accurate. Lyme tests done locally are almost worthless. Also, and equally important, your Igenex results need to be evaluated by an ILADS trained Lyme specialist.

Edited by PatriotM
  • Like 1

Share this post


Link to post
Share on other sites

I have PD but yesterday to treat a terrible colitis attack they gave me  levaquin...about two hours after I was tingling everywhere unable to stop pacing and even a cold shower did not help. My doc's rn said it was a reaction to the meds and continue. I did my research and it is so serious a reaction there are thousands of people who are permanently reacting.Still, I am better today but thank God I trusted myself.Having PD is enough.

So, have you before this happened used antibiotics? A certain group  like levaquin. Sometime the reactions are permanent and get worse not better.A year from now I could get worse.I had this happen from Strattera in 2005...then a year off the meds I got cold induced urticaria and they said it was the Stratter a. 2 years later i got Parkinson.I was very healthy, and while on Strattera they diagnosed me with 4th stage liver disease . Mayo admits Strattera may have contributed

but did not cause it....I think  that these new drugs are shutting down peoples nervous system.And nerves follow a pathway that maybe can  not be stopped????

Hillary

Share this post


Link to post
Share on other sites

I don’t have Parkinson’s, my husband does.  I have such a serious nervous system reaction to levaquin and all quinalones including cipro  that I refuse to take them.  There are alternatives.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×