Does this sound like a form of Neurodegeneration, and do any affect 20 year old?

[Cow527]

  Hello all,

  I have 20 years old, and I think I have some kind of neurodegeneration. I don't know much about them, but to me it sounds like Shy Drager or Parkinson's. Do they attack people as young as me, or is there one that does?

About 2 years ago I started getting weekly night terrors, and a tremor in my left hand. It would only twitch while the hand was completely relaxed: eg, in my pocket or resting. This symptom persisted until 6 monthes ago, until the frequency increased and other symptoms emerged.

Now the night terrors are nightly, and I have been having problems breathing. The resting tremor affects both my hands and feet and I am suffering from muscle faciculations (sorry if I spelled that wrong) on my entire body. My legs feel week and cramped most of the day, but my gait has not been affected. Also, yesterday my hand started to cramp on the side opposite the thumb. There is no purpose to the movements, but it's very painful. I can sit and watch the side of my hand pulsate. I don't know if this is related, but my hands are now always cold, no matter what the weather is. It could be related to my heart or something. I also have myoclonic jerks in my arms and legs reguardless of how sleepy I am. They happen at random intervuls during the day. There seems to be something twitching on my at any given time.

  The earliest I could get an appointment is March 21st, so please help me. I'm not expecting a full diagnosis, but I am getting worried. A new symptom seems to emerge every few weeks. If you have anything to suggest, please do. Thank you.

[CCF-Neuro-M.D.-PW]

Neurodegeneration is a general term for a progression deterioration of neurological function associated with some form of cell loss or destruction in the central nervous system. There are many causes. It is very rare in someone so young, but there are a few rare causes.

This cannot substitute for a formal medical opinion, so you will need to see a neurologist as you are doing, to sort this out.

One important consideration in a young person with tremor is to look for Wilson's disease. THis is a disorder of copper metabolism that can result in tremor, pyschiatric disturbance and liver degeneration. It is treatable so important to diagnose to prevent further damage. Diagnosis is by blood and urine tests, and by ophthalmological examination for 'Kayser-Fleischer rings'

Blood tests for things like a hyperactive thyroid gland, calcium, liver/renal function should bedone to look for abnormalities that are reversible.

Juvenile Parkinsons and Huntingtons disease so occur but are very rare and less likely. There is a reversible form of parkinson/dystonia due to a gene defect that occurs at a young age called Segawa disease (or 'Dopa-reponsive dystonia' - L=dopa tablets essentially reverse the problem and coud be tried.

Some other considerations might be a late presentation of a metabolic disorder like Tay-Sachs, or Neuronal Ceroid lipofuscinosis (both associated with myoclonus and an increased startle response. New-variant Creutzfeld-Jacob disease is also a consideration,although it tends to be a bit faster than you describe.

Sorry to present so many diseases. I do not know what you have, it may be something readily treatable like I have mentioned. Only your doctor who sees you, can accurately come up with a list of possible diagnosis and choose tests based on the complete story and physical examination and/or MRI etc

Good luck

[Cow527]

Sorry for this post. I also meant to say that the doctor has ruled out any thyroid or calcium related causes.

[patsy10]

Is your appointment with a neurologist?. March is a long time away. I put my name on a cancellation list so instead of waiting 6 weeks.  I got an appt. in 2 weeks do to a cancellation. It's very scary to have symptoms like this and then have to wait so long for an appt.  Good luck to you.

[childrenrtreasures]

I don't know much about Parkinson's and Shy Drager but have you had your vit. B12 levels checked? What about potassium?

I hope you're able to get some answers soon. I have similar symptoms due to thyroid disease (with the exception of night terrors...my son had those when he was a toddler though...VERY scary!!). I know you said you're dr has ruled it out but have you had your thyroid antibodies checked (TPO and Tg)? My labs have always been in range but it doesn't necessarily matter since the antibodies cause my symptoms to swing between hyper and hypo.

Just a thought.

Kelly

[Cow527]

Thank you for the responses. The appointment is with the neurologist. I live close to Edmonton and their aren't many neurologists in the area. I'll look into if I can get onto a cancelation list.

There could be something wrong with my thyroid that the doctor missed. I'll see if I can get another blood work done. I also recently found out that my Identical Twin Brother has the static thumb twitch that started my symptoms. Maybe he has an earlier state of the same condition.

I've been doing some research into ALS recently. Does that sound probable? I can only find general information reguarding it, but the age of onset is possible for people of my age. Thanks for any more responses.

[Karonnie]

Do you recall having a sore throat at all sometime in the 6 or so months prior to your symptoms begining?  Do they seem worse during particular times of the month?

If either of these are the case you may want to also consider Sydenhams Chorea - a sequal to an untreated (or poorly treated) strep A throat infection (can easily be misdiagnosed as a viral sore throat), it could help to have your ASO titre checked but if you had a delayed onset (which can happen) this may have gone back to normal.  This disease - a symptom of Rheumatic Fever can also damage the heart valve so I would follow up on that if this is a possibility.

The other is Chorea from hormones - Gravardium (not sure spelling is correct sorry) usually from excess oestrogen (or poor synthesis) and occurs more commonly in pregnancy or on the contraceptive pill (maybe you could investigate a more balance single phase pill if this could be a cause) in those that suffered Rheumatic Fever as a child but has also lately been linked to those adults who haven't but who seem to be hormonally susceptible and as most woman from Westernised countries have unbalanced progestrone to oestrogen this could be more common than is being accepted.

Anyway they're worth a thought. And if you really feel you have this but are dismissed initially keep on and follow it up - believe me this disease is still around and adults do get it. I suffered RF as a child and have suffered recurrances as an adult with carditis (heart inflammation) and joint inflammation, rash, nodules and the chorea.

I hope you find a diagnoses real soon! Good luck

[wendyz]

Hello!  This is the first time I have posted on anything like this so hope I do ok.  I found out yesterday that the Doctors suspect Shy_dragers in my dad.  he is 64 years old and have off and on been battling bouts of dizziness and depression for the last oh I would say 4 years.  He has started stumbling a bit about 3 years ago.  more like losing his balance.  then he stared having a bit of shaking in his hands about the same time.  doctors told him he may have parkinsons.  he has had heart tests Mri's CAT scans and everything and have all come out good.  this last year he has been falling when he gets out of bed or stands up fast.  his blood pressure tends to fall when standing but since he has been takin off his blood pressure meds hasnt been falling enough to pass out or fall but has been still falling.  at night when he sleeps his blood pressure is high.  His walking doesnt seems to be any different he drinks a lot of water so he seems to go to te bathroom ok.  He goes threw times where he has no symptoms at all other then the blood pressure thing.  I guess what I am asking is with shy-drager do people go threw periods of time where things are normal?  He is still sharp and a pin.  he still does all the same activities he did before he retire.  actually seems to be better off all the meds he had taken.  He is still active for being 64 the only wear I see on him is normal aging wear.  He goes in for the table test this week.  I am not sure what that will do for him but from all I read about shy-drager is that he should be going down hill specially if he has had ths for several years.  I mean if he is having the symptoms it is very very mild.  If he has shy-drager what would we expect for his health.  I mean will he have good periods of time and then bad or will it be like a downhill battle?  also is shy-drager passed onto others in the family?  I guess I should also add that my dad had a high herna in his stomache so he was put on this medication.  I really an not sure what it is called but it was to help digest his food.  The meds he was on was only suppose to be takin for like no more then 6 months and his doctor kept him on it for like 6 years.  his neurologist took him off it and told him that extended use of this drug causes Parkinsons that is when he got diagnost with medication induced Parkinsons.  I dont know if that has any effect on things now or what but it is the same doctor that says he suspects Shy-Drager..

[Corin]

This is my first time and hopefully someone can ease my mind and I'm going crazy thinking I may have PD.  I pray that I don't.  I'm 42 and for the past week and a half my thumb has been twitching.  Also, I noticed that when I'm going to sleep and I wake up in the middle of the night my body (usually my head and right arm) I feel that my body is having a tremor even though you can't see it.  There are no movments, it's like my inside is shaking.  I didn't want to go to sleep at night I was so scared.  I did make an appointment with my doctor for next Wednesday.  I've always had a clean bill of health.  I hope someone can shed some light.  When I do a search on google all you see come up is Parkinson's this and Parkinson's that.  Is my life over????

[Corin]

This is my first time and hopefully someone can ease my mind and I'm going crazy thinking I may have PD.  I pray that I don't.  I'm 42 and for the past week and a half my thumb has been twitching.  Also, I noticed that when I'm going to sleep and I wake up in the middle of the night my body (usually my head and right arm) I feel that my body is having a tremor even though you can't see it.  There are no movments, it's like my inside is shaking.  I didn't want to go to sleep at night I was so scared.  I did make an appointment with my doctor for next Wednesday.  I've always had a clean bill of health.  I hope someone can shed some light.  When I do a search on google all you see come up is Parkinson's this and Parkinson's that.  Is my life over????

[Corin]

This is my first time and hopefully someone can ease my mind and I'm going crazy thinking I may have PD.  I pray that I don't.  I'm 42 and for the past week and a half my thumb has been twitching.  Also, I noticed that when I'm going to sleep and I wake up in the middle of the night my body (usually my head and right arm) I feel that my body is having a tremor even though you can't see it.  There are no movments, it's like my inside is shaking.  I didn't want to go to sleep at night I was so scared.  I did make an appointment with my doctor for next Wednesday.  I've always had a clean bill of health.  I hope someone can shed some light.  When I do a search on google all you see come up is Parkinson's this and Parkinson's that.  Is my life over????