Hi everyone,

I am a 29 year old male from Canada and am experiencing many parkinson's symptoms: acting out dreams, internal and postural tremors, throat problems, constipation, cramping of hands and feet, painful muscle contractions, shoulder pain, neck pain, leg pain, lower back pain, sebbhoratic (spelling) dermatitis, increased sweating, depression, anxiety, unbelievable fatigue, no sex drive at all, rigidity (noted by doctor) in arms, and I'm sure the list goes on. Some of these symptoms have been occurring for 5 years.

Anyways, my neurologist has done many tests to rule out all other conditions and has told me she believes this is somatization. I think this is ridiculous and asked for a referral to an mds, she refused. I have a follow up with her in 2 weeks. This is where you guys come in. Do you have any advice for me?

One other question I have is that, if you were 29, would you have high hopes that there will be either a cure, or great treatment in my lifetime?

Thanks so much guys, this forum is such a great resource.

James

Please read Laura's thread. It might be helpful to you. The thread is asking what is Parkinson's disease.

Vicky

Hi Vicky,

Thanks for the response and for welcoming me. I am having a hard time locating the thread you mentioned. Is it titled "what is parkinson's disease"?

Thanks,

James

i suggest you pay privately for a 2nd opinion.

imho your're acting a little irrationally, you have to work within the medical system, your neuro isn't going to be swayed by anything posted here.

good luck.

Hi soccertese,

Thanks for the response. Unfortunately, paying for a private consultation in Canada is not an option. Everything here is based off of referrals. To see another neurologist, either my current neurologist or my gp would have to refer me.

I guess I was just wondering if anyone here has gone through this same situation and, if so, how it was eventually resolved.

Is it worth asking for a mds referral again, or should I just wait until the tremor and rigidity worsen and the re-visit the general neurologist? We only have one mds in my area and, although he comes highly regarded, the wait time to see him is 8 months.

The pain and fatigue are very much affecting my quality of life, this is the only reason I am trying to rush a diagnosis.

Thanks again, everyone.

I'm open to anyone and everyone's opinions at this point.

can you travel to the U.S. or another country?
you are basically saying your MDS is misdiagnosing you. i visited a MDS thinking i had a pinched nerve and got diagnosed with pd based on slightly dragging my right foot and some muscle rigidity. got a 2nd opinion and the MDS said she could tell i had pd from my face. everyone who knew me couldn't believe i had pd including my GP - my symptoms were that minor.

You listed almost every symptom of PD and your MDS didn't give you a diagnosis.
Have you purchased a book on pd and highlighted your symptoms and presented it to your GP? Have you contacted your local parkinson's support group for advice?

Hi soccertese,

I think part of the problem is that I am seeing a general neurologist and not an mds.

I have spoken to my local parkinson's chapter but it's not like the United States, they have no connection to mds and are basically just there to provide emotional support.

I was thinking about printing something out and highlighting specific parts to show to my neurologist, but I thought that might be condescending. I might do it anyways.

I agree that I have many pd symptoms and don't understand why this is so difficult. In the meantime, because the neurologist said she thinks this is somatization, I am dealing with my family thinking I'm crazy.

I guess I will just go to my appointment, tell the neurologist that nothing has gotten better and that I really think there is something wrong. If she says somatization again, I will pull out the highlighted sheet and demand a referral to an mds.

Thanks again for responding. I have read many of your posts and greatly respect your opinion.

James

Hi, I'm in the UK we have a somewhat similar system here. We rarely have a neurologist who uses the MDS label. They are more usually neurology consultants with a specialism. You need one with a specialism in Parkinsons, so you will have to ask and find out who that is.

PD is notoriously difficult to diagnose, and I am not sure that everything you mention fits particularly well. You are also quite young, that does not rule it out but makes it less likely.

I would urge you to have a B12 assay. B12, intrinsic factor, parietal cell antibodies and folate. This test is often misread by doctors, and B12 deficiency can cause the things that you describe. If you are the low end of normal or below then you could have your culprit. If not you have ruled another thing out.

Doctors in general do not take kindly to internet stuff, i would listen closely to what they are saying instead. There are quite a few things that will mimic PD. It is rare for anyone to get a diagnosis in a hurry. Everything happens slowly.....

You have options. If I were you, and I'm not giving medical advice or saying you should do this, but here are some things you will learn if you read through this forum:

1. many things have almost identical symptoms as PD:

B12 deficiency (I think this is sometimes called pernicious anemia)...lots here in the PD forum on this but the bulk of the meaty posts are over in the peripheral neuropathy forum...go read those and see what you think.

thyroid issues...don't think your young age makes you immune from this...read "They Thyroid Solution" I think it's called, by Dr. Arem, see what you think of that....

there are others but these are the main two...reading through this forum for posts titled things like "is this PD?" etc. may help you find newbies who had questions similar to yours...

2. even if you really do have PD, whatever PD is (see Conductor's post here called "Name that disease") a lot of people here have posted that they wished they had not started the PD drugs until later, if ever....instead trying mucuna puriens, read about it on this forum for more, tai chi and meditation, exercise, fava beans (you can grow them but that'd be tough in Canada since your growing season is so short).

I think the best bet today is stress reduction, healthy diet as much as possible, exercise is critical, and laughter...you may also want to read Dr. Wahls' book on healthy diet and elimination of wheat and dairy-her MS is pretty much gone.

Another book to read is Dr. Newport's book on coconut oil for her husband with Alzheimer's, many PWP believe coconut oil has helped/is helping their PD, search this forum for that as well, some of those PWP taking massive quantities of the c oil are here

James,

I'm not a doctor, I've not examined you, so treat my comments with scepticism, but this is the way I see it:

You may have PD, or you may not, either way you have something that is impacting on the quality of your life. Even if that something is "psychological", it is real to you.

Your list of PD-esque symptoms appears impressive. Are these symptoms visible to other people? If your neurologist has seen them, but not diagnosed PD, there must be a reason. Have you asked? He or she may give good reasons, such as you don't have many of the signs of PD. Alternatively, he/she may give a bad reason, such as saying (wrongly) that you're too young to get PD.

I don't see it as either PD or somatization. Your symptoms could be caused by something else. For instance, you should also ask your doctors why they have eliminated Lyme Disease and West Nile Virus, etc..

Perhaps 30%, more for early onset, of PD is due to genetic components [1]. Is there any family history? 23andMe have a scheme where people diagnosed with PD can be screened for free. Since you've not been diagnosed you will probably need to pay ($99, I think).

PD is a progressive disease. So, you may want to monitor your symptoms. You can measure your tapping speed on my website:

http://www.parkinsonsmeasurement.org/PDMeasure

Finally, let me say that I hope that your doctor's diagnosis is correct. If so, you can be cured, and get on to live a normal life.

Reference

[1] http://www.cureffi.org/2013/09/17/ge...nsons-disease/

John