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Branden01

I think I have parkinsons

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My journey started 6 years ago. I started going to the Dr for some weird neurological issues at the age of 23. Long story short, after all of the tests (blood, emg, mri's, and clinical exam), he said benign fasciculation syndrome. A few months later, my stress decreased and the weird neurological stuff greatly reduced. That's the first time I felt the tremors.

 

In 2015 I took a medicine called Phentermine. It jacked my nervous system up. Started with stabbing pain in my head. The pain moved to my face. Brain fog and confusion followed, and then came the muscle stuff worse than ever. All of the twitching, muscle cramps, foot drop, balance issues, and internal tremors at night. At my worst periods of stress, my left leg started having a very visible tremor, as well as my right arm. Both incidents we're short lived. It felt like I was losing the ability to use my arms and legs. They sent me to the Mayo clinic. I saw many doctors and performed many tests. They again concluded benign fasciculations. About 4 months after Mayo, the nervous system started to relax and the symptoms went away again. 

 

January 2018, the stabbing headaches came back again.  The stabs moved into the face and even occasionally in my limbs. My neck randomly became so stiff for about a week. The headaches have again mostly subsided about 6 days ago followed by more neurological stuff. In the past six days, I feel the internal tremors at night, as well as during the day now. My jaw and tongue have tremors that come and go that makes my teeth chatter and feels like I can't talk. I have random bouts of severe nausea and vomiting as well as dizziness and sweating during an episode. My entire body is twitching all the time. I can often times feel the tremors in my arms, but they aren't visible and it feels like I am losing control of my limbs. The tips of my fingers and toes lose sensation, then get stiff. When an episode gets bad, I get bad nausea and sweating. The muscles in my limbs start to feel a little tight like they are about to all start cramping. My right eye gets blurry and sees double vision. My legs sometimes give out a little, but I catch it. Yesterday was my first time having balance issues, which I think the dizziness and confusion played a big role in.

 

To me, this seems to clearly be Parkinson's. I worked with pesticides for 6 years. I'm 29 years old now. I am hoping and praying that it goes into a quiet period again as I transition to supps, diet, and exercise to promote brain health. Hopefully if it is Parkinson's, that will greatly slow the progression and symptoms like some claim it does. When the attacks happen, which is usually a few times during the day and night, I get overwhelming anxiety with it. The anxiety, nausea, and dizziness has been the hardest part so far.

 

What do you guys think? I could use some cheering up. I just had my first child a month ago and will lose my job if this is Parkinson's, so I'm a wreck right now. I'm being referred to another neuro.

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Branden,

This does not sound like Parkinson’s. PD develops over a long time and usually starts on one side. I’ve never heard of it going into remission then coming back. I hope your doctors figure out what’s wrong with you. Don’t try to self diagnose yourself, you’re only going to see PD in every symptom you have.

Dave

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Thanks. Thats what I think most of us want to hear. I would love to figure out what's making my nervous system go crazy. I have low vitD, low magnesium, and my blood pressure has been high, which is odd because I have always had 120/80 my whole life. We were seeing a headache specialist for the weird stabbing headaches, and migraines can have some neurological stuff, but not like this. 

 

Regardless, I'm going to be going on a high healthy fat, low carb diet like the Mediterranean diet for brain health. My brains definitely not happy right now.

Edited by Branden01

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Hi Brandon

the easy way to see if its PD is to take sinemet as a trial.Another hallmark of PD is loss of smell.

Stabbing headaches can be a sinus problem  sometimes using a simple nose spray can help alot.

My blood pressure was high like yours,mine was a white coat variety and resolved with regular long walks to get in shape.

I'm so sorry you are having such trouble at a young age.Difficult neurological problems get very little attention in today's ,everything is all about money medicine.

Just stay as calm with your symptoms and find a smart young doctor who hasnt been contaminated with greed.

best of luck

john

 

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I've had the headaches since January. The GP sent me to the headache neuro. I wasn't overly stressed or anxious at the time because it's something I've been through twice before and it went away after about 6 months each time. Even when the muscle stuff started back up. But it kept getting worse. The headache neuro suggested sending me to the movement disorder neuro because there's too much electrical stuff going on in their opinion for it to be just migraines and the anxiety takes off from there. The stiff muscles and tremors in the jaw and tongue was the concern. Plus dizziness and vomiting. I didn't realize how tough Parkinson's is to deal with untill I started researching it. I even set up monthly donations to a good Parkinson's organization that I will keep going regardless of what they determine for me. There needs to be a breakthrough in treatment and it sounds like they may be close.

Thanks for all the wisdom. I would like to get a real name for mine so I can try and figure out how to deal with it.

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If your smell is still good, I would rule out Parkinson’s myself. I would not go with a Sinemet trial unless your md is 99% sure you have PD but this doesn’t sound like Parkinson’s at all even remotely 

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Try to see an MDS --- movement disorder specialist --they know PD 

 

LAD

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a high healthy fat, low carb diet like the Mediterranean diet << this is not Mediterranean, this sounds more like paleo or keto diet 

keto should be great for the brains weither you have PD or not. 

in any case I agree with the others - this is not PD

Hope you find a way to deal with it. good luck        

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Well, it's lower carb compared to our traditional western diet. Instead of about 300 carbs a day, it's closer to about half of that on average. Keto is super low carb. The brain needs about 96 carbs a day for an adult male according to the Mayo clinic. I was looking more at the sources of fat as the Mediterranean reference. Things like olives, avocados, olive oil, seeds, nuts, and fatty fish rather than brats and hamburgers lol.

 

I also found what caused the big spike in neuro problems about a week ago. My tremors became full body. Vomiting and dizziness. Weakness, muscle spasms, and loss of sensation in my fingers and periods of extreme anxiety. It's was caused by a new medicine they perscribed me for the migraines. We figured it out last night. I stopped taking the medicine because I figured it wasn't helping me. The symptoms got much better. Took it again last night and within half an hour all the symptoms returned. Looked at the side effects and I have no idea why anybody would perscribe the stuff. I'm pretty sensitive to medicine. All three bouts I have had has been when a Dr has prescribed some tough medicine. 

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Great to know you are free of tremors!

One of my friends has migraines, he doesn't take any meds

He is on keto , but I don't know if it helps him with his migraines , I don't know why he moved to keto - it was more than 10 years ago..

This is not true our brain needs carb, I will find reference and post it here.

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On 4/1/2018 at 10:28 PM, LAD said:

Try to see an MDS --- movement disorder specialist --they know PD 

 

LAD

Hi Lad

i had to add ,MD spec.are not so spec.I have seen many who show little knowledge of PD.

It's just my experience so far over 8 years.

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4 hours ago, johnny said:

Hi Lad

i had to add ,MD spec.are not so spec.I have seen many who show little knowledge of PD.

It's just my experience so far over 8 years.

That's unfortunate... I guess I am lucky... I have had good experiences. 

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Acupuncture has helped my sister with migraines and I am trying mushrooms for neurological issues.  Medication side effects have grossly troubled our diagnoses in the past. Comedy and a drastically simplified life have been vital for dealing with the emotional strain of chronic illnesses.  I hope you can find ways to de-stress your life.

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While it's true that many who have Parkinson's have lost their sense of smell, it is not a reliable indicator for the presence of the disease. You can have Parkinson's and still have your sense of smell. I do.

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Waruna01,

I also have my sense of smell, though somewhat diminished.   W01, it is not helpful to continue to categorically state that people who have their sense of smell do not have PD.  It simply is not true and both Dr. Okun and many members on this forum have attested to that.  Gardener

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The smell thing is not a hallmark of PD. my husband was diagnosed with PD 7 years ago now and still has an acute sense of smell.

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Well, it's been over 5 months since I've discontinued the medicine. I am in a better state of mind, but I still have some symptoms that are causing me concern.

 

I still have all the sensory stuff and body wide muscle twitches that I have had for seven years. Pins and needles. Periods of perceived weakness that moves and goes away. Stiff painful fingers that come and go.

 

But what has been most concerning to me rrcently is my periods of nausea, the moving and radiating areas of stiffness in all of my limbs, and that my fingers and toes all kinda move on their own. It's periodic though, but seems to be more frequent. I have days where the issues aren't as bad, but the past 3 weeks have been rough.

 

My left hand is the worst. I feel some weird movement in my left forearm, then my fingers on that hand start to all twitch. It's not particularly aggressive, but there are usually about 3 or so fingers that play a role. That is actually pretty common for BFS. It does that for a few minutes, then subsides. Then it will start up in my right hand or my feet.

 

Those are even less severe, but has the same feeling. I can feel something in my foot or forearm, then the toes start to twitch and move for a minute. Then it subsides. It kinda does that on and off about 20 times in a day. When my headache comes back, my jaw starts doing the teeth chattering and I stutter. That is unusual for bfs. The fact that I have it in all 4 limbs, and that it comes and goes from limb to limb all day long, lasting only for about a minute or so, then subsiding. Last night was particularly tough because every time I woke up I felt my fingers and toes moving around.

 

My GP wants me to get tested for Lyme's disease. I have been under a constant fluctuation of stress and anxiety because of this. So I don't know if the issue is stress, my BFS, or something new. We decided against going to a movement specialist at the end of April because we believed that the medicine caused the tremors. That might have to be reconsidered again, but I am so tired of going to doctors that I don't want to go. Does it sound like I have anything to be concerned about as far as Parkinson's or am I just being a hypochondriac?

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Funny that you mentioned Lyme Disease...I wondered about it when I read your previous posts. Do you live or have you visited a region with tick populations? One of my RSB friends was recently diagnosed with Lyme Disease, shortly after vacationing in the Northeast this summer. Her only symptom was a very high fever for 4 days; she had to ask her GP to be tested. I understand that untreated Lyme Disease can manifest neurological (among other) symptoms as months pass.

Still doesn't sound like Parkinson's to me. I don't think you're a hypochondriac. I know it's frustrating to chase a diagnosis, but don't give up. It sounds like you know your body; someone out there will be able to help you figure out what's wrong with it.

You may want to check out this thread: http://forum.parkinson.org/topic/23272-lymes-disease-mimics-pd-symptoms/

Edited by secret squirrel

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Yes, I do live in a high tick area and I have been bit by ticks in the past.

 

Also interesting that I just got a bunch of blood work back today. The blood work showed insulin intolerance, high blood glucose, and normal a1c. Also showed my cortisol levels were normal, but my acth was high and my liver enzymes were elevated. That was by an endocrinologist looking at Cushing's. My test results mean I will probably have to have more testing and imaging done to rule that out now. This is getting really old.

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