Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
Sign in to follow this  
Bren128

Neurologist cannot diagnose me, do I have Parkinson's?

Recommended Posts

Hello my name is Brendan and i'm a 25 year old male who is active with no family history of PD or Essential Tremor. Im a student online and I noticed this past December a cramping and slowness in my fingers. 3 months ago I noticed my fingers were very slow when I tried to use them in unison. They began to slow and tremor but only when I tried to use them at once. I also noticed my left arm not swinging when walking.

 

I then went to see a neurologist who gave me an mri on my neck and brain, both were negative. I was tested for wilsons disease which was also negative, EMG also negative. My arm was getting weaker and weaker, I was losing muscle in my arm and having a hard time flexing and lifting things.

 

Doctor gave me sinemet for PD, took it for 2 weeks it didnt help at all. He gave me 50 mg of primidone which helped the tremors significantly but I had to stop taking it because it made me sick. He gave me 30 mg of Phenobarb which is definetely helping the tremors, I barely shake at all even the muscle weakness is better. My arm still doesnt swing when I walk and I frustratingly still cannot type because my fingers are so slow on my left hand. Again I do not have at tremor at rest, sleeping helps my tremors. Stress, heat, cold, excitement, exercise and definitely caffeine make my tremors much worse.

 

I believe I have essential tremors, but why do I have the slowness in my fingers still? My neurologist is sending me to a specialist in October but that seems forever away. Also with me being 25 is it smart to be on Phenobarb? My walking has been fine so far. My neurologist has flat out told me he doesnt know what I have and dx me focal dystonia.

 

I can live with what I have, no matter what it is I just want to know what it is!

Share this post


Link to post
Share on other sites

It does sound a lot like dystonia and a dystonic tremor, but you will need a diagnosis from an expert. Sometimes a DAT scan can be useful to see if the dopamine system is involved (the dopamine transporter) which can help rule out PD. Make sure your dose of sinemet was high enough for the trial (up to 2.5-3 tablets of 25/100 three or four times a day). Also remember if your stomach has delayed emptying you may not absorb sinemet. As long as you watch for cognitive slowing, the phenobarb is ok, and we usually use primidone which metabolizes to phenobarb.

 

Keep us posted. I agree with expert exam and you may also consider trying anticholinergic drugs.

Share this post


Link to post
Share on other sites

Thank you for the quick response, is there anything other then PD that would completely eliminate my arm swing?

 

I took one 25/100 sinemet tablet a day for a week and then I took two a day for the second week before stopping. It made me tired and my symptoms got worse while on it.

 

 

I was also on doxycycline while on the sinemet for my acne but the phenobarb has a warning for taking the medication with doxy so I stopped it, not sure if its safe to take.

 

I will definitely keep you updated. I dont see many people my age (25) with PD, but the slowness and lack of arm swing specifically point to that. I think my essential tremor is an added bonus.

 

Thank you again for responding.

Share this post


Link to post
Share on other sites

A wise man is not one who does not make any error but one who does not do principal error/s and the other error/s is able to correct easily and promptly.

You have tried to enter into our health care system in your way and it did not work as you believed it should work. You are not alone and in German language

it is aptly described as "Man probiert....", implicit is that you have paid for learning your lesson.

Do first first, and enter into our health care system through a board certified family physician office.

gmk

.

Share this post


Link to post
Share on other sites

Decreased arm swing can be seen with small strokes, dystonia, bulging discs and other maladies. If you are unsure between PD and ET a DAT scan could be helpful. ET typically does not reduce arm swing.

Share this post


Link to post
Share on other sites

Decreased arm swing can be seen with small strokes, dystonia, bulging discs and other maladies. If you are unsure between PD and ET a DAT scan could be helpful. ET typically does not reduce arm swing.

 

Thank you, I also have been waking up with night sweats. I will update my status next month when I see the arm movement specialist, I will mention the DAT scan for sure!

 

thanks again

Share this post


Link to post
Share on other sites

A wise man is not one who does not make any error but one who does not do principal error/s and the other error/s is able to correct easily and promptly.

You have tried to enter into our health care system in your way and it did not work as you believed it should work. You are not alone and in German language

it is aptly described as "Man probiert....", implicit is that you have paid for learning your lesson.

Do first first, and enter into our health care system through a board certified family physician office.

gmk

.

 

I should have pointed out that I visited my board certified family ''doctor''. She in turn sent me to the neurologist. The neurologist is sending me to a specialist. I have spent a lot of money so far, I hope that there certified!

Share this post


Link to post
Share on other sites

Hard work and self-reliance are celebrated American Virtues.

American health care system gives you freedom of choice of physician to take care about yourself and your family.

Being 'board certified' means that she has satisfied professional standards set up by the corresponding specialty board but does not yet guarantee that she will be the right choice for every patient coming to her office, including yourself. If your choice

was right or wrong, you will see from the result/s of your cooperation.

gmk

Share this post


Link to post
Share on other sites

Well I went today. The specialist said that im awfully young at 25 but im showing signs of P/D. He suggested I do a new kind of blood test to determine it for sure. I am also going back next next thursday , hes going to have me take two of my sinemet tablets and then test to see if there is any affect, since the sinemet didnt help before. He also didnt think my dosage was high enough. I do appreciate the insight. I will keep you updated on my results.

 

Also I received a pamplet that has information about volunteering to test new drugs/methods for P/D. IF I get dx with it, are there are any new drugs/methods you would recommend? I unferstand the risk, but desperate times call for desperate measures. Thank you for all of your help!

 

Brendan

Share this post


Link to post
Share on other sites

Hang in there.

 

PDtrials.gov and clinicaltrials.gov are registries where you can search for trials.

 

I like to use sine met 25/100 and work up to 3 tablets at each dose and given 4 times a days to be sure I am not missing a treatment effect. In my practice, I then back down to the appropriate dose. If the effect manifests earlier in a 6-8 week medication titration there may be no need to push to higher doses.

Share this post


Link to post
Share on other sites

So I went to the doctor again today, my blood test isnt back yet that tests for the mutated gene. Doctor had me take two sinemet tablets. I waited 40 mins, they did some physical tests and again no improvement at all. The doctor is now prescribing me with Azilect to see if it helps. I actually saw two specialists at once, I could see the confusion on their faces. I read somewhere that younger pd patients are likely to have the gene, but its typically hereditarty and nobody in my family has p/d.

 

Thanks again.

 

Brendan

Share this post


Link to post
Share on other sites

There are actually many genes and most only available by research.

 

It may be more useful to have a DAT scan and determine if you have a dopamine issue. Also slowly over many weeks increasing sinemet to 3 25/100 tablets given at each dose 3 or four times a day, could also help to sort this out. I like to try a high dose but slowly over 6 weeks work up to the dose and I do scales before and after the trial.

Share this post


Link to post
Share on other sites

There are actually many genes and most only available by research.

 

It may be more useful to have a DAT scan and determine if you have a dopamine issue. Also slowly over many weeks increasing sinemet to 3 25/100 tablets given at each dose 3 or four times a day, could also help to sort this out. I like to try a high dose but slowly over 6 weeks work up to the dose and I do scales before and after the trial.

 

I have had several people tell me im too young for sinemet, and now the specialist wants me to take Azilect(rasagiline) and Artane( Trihexyphenidyl). There trying to use these meds to diagnose me but im afraid of the long term effects. I thought that azilect was seldom used, im thinking about waiting for my results of the blood test before i take these meds. Just how dangerous are these for someone my age? Meanwhile the left side of my neck and face has become tight. My symptoms have rapidly progressed in the past 4 months. Which seems incredibly fast for parkinsons.

 

Thanks again, I think your advice has been better then the three neurologists I have seen! :)

Share this post


Link to post
Share on other sites

I would advise you to read my What's Hot Column on the main page about sine met not being toxic and not accelerating disease progression. There is a great myth out there that sine met is bad, but the reality is that when used properly it is very safe and very effective. I personally worry about anticholinergics such as artane which have cognitive and other side effects. I will rarely use them, and in some cases they are effective.

 

Finally it is hard to judge progression when you are not on dopaminergics.

 

Hope that helps.

Share this post


Link to post
Share on other sites

I would advise you to read my What's Hot Column on the main page about sine met not being toxic and not accelerating disease progression. There is a great myth out there that sine met is bad, but the reality is that when used properly it is very safe and very effective. I personally worry about anticholinergics such as artane which have cognitive and other side effects. I will rarely use them, and in some cases they are effective.

 

Finally it is hard to judge progression when you are not on dopaminergics.

 

Hope that helps.

 

I am too nervous of the artane, my fiances mother whos a nurse is concerned about the side effects. She mentioned It might be bad for the child if I were to get my fiance pregnant( is there any truth to this?). Ive only been on azilect a couple days, and im due to start the artane next week. No change in my symptoms yet. The only medicine that has helped thus far was phenobarb which was great for my intention tremor and weakness. My blood test still isnt back, but should be back soon.

 

If my blood test is negative I am seriously considering mayo clinic. Would you recommend this? With not having a resting tremor, being 25, not responding to sinemet im starting to think its something else.

 

Thank you,

 

Brendan

Share this post


Link to post
Share on other sites

For danger of specific drugs in pregnancy you should bring a list to your doc and pharmacist.

 

For diagnosis I think it is a great idea to see an expert at Mayo or anywhere with experience.

Share this post


Link to post
Share on other sites

Thank you, my left leg is really bothering me all of the sudden and my balance is off. My leg felt like it was going to buckle when I was going down steps at the packer/rams game today. I thought it would be years before it got into my legs. All of this in 4 and a half months. I will post the results of my tests here. =/

 

Thanks as always.

Share this post


Link to post
Share on other sites

Well after two days of artane, my stiffness is gone, my weakness is gone, the bradykinisia is much better im actually using my left hand right now to type, my left arm is now swinging again, To be honest im surprised it's working because nothing else has, but thankful! I'd like to take something similar to artane but without the possible side effects. My blood test still is not back, been 3 weeks but im patient.

 

Thank you,

Share this post


Link to post
Share on other sites

Thanks for the update. Regardless of the results of your blood test you should be treated by your docs to improve your symptoms. PD, dopa responsive dystonia and other issues may respond to this type of therapy.

Share this post


Link to post
Share on other sites

I saw the doctors today, my blood test was negative and didnt show any mutated gene. My doctor said a lot of people my age with Parkinson have this mutated gene. Which is good news for me, my doctor(s) basically said he doesnt know for sure what I have but there calling it Parkinson's for now. Neither neurologist knows for sure. Im still responding well to the artane.. If you have any insight or experience with this please share, as I have few answers. I do understand that I may have been exposed to something in the environment which may have caused my parkinsons like symptoms. It's rare that I have parkinsons symptoms at 25 but no mutated gene. Im probably going to try the datscan.

 

Thanks as always!

Share this post


Link to post
Share on other sites

Dr Okun,

 

Doesn't it sound like he's getting worse from taking all the medication? This is like watching an episode of House where the patient gets all kinds of diagnosis that are wrong and hopefully by process of elimination in the end is it finally revealed what the problem is. I think the anxiety from all of this can be contributing to his tremors too.

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

Sign in to follow this  

×