still trying to get a diagnosis

10-26-2008, 01:28 PM

Ok, I started out 3 years ago with stoke like symptoms - had the MRI's, Cat scans, Lumbar punctures, blood work etc. They thought I had MS - but after all the tests, they feel its not likely. I'm a 45 year old woman - who until this has been healthy all my life.

Recently, my primary started me on Lyrica as she felt I might have Fibro. She then added Levodopa/Carbidopa recently to help with the restless leg syndrom. I'm exhausted all the time and running out of options on actually being a contributing member of society. Reading about PD, I now realize that I am in this category. I am also being retested for Lupus - as I have some of the hallmarks of that illness.

Here are my symptoms:

LEft leg is clumsy - drags and no reflexes when tested. It likes to cramp up in these strange shapes - if I tried to make my foot do it, I couldn't. Restless leg especially at night. I have little sensation in my hands and foot - have burned myself numerous times not realizing the bath water was so hot. I have chronic vertigo (currently taking Cerc). I walk very slowly - if you told me to hurry up, I couldn't. I walk with a cane as the vertigo makes me unsteady. I've fallen 5 times this year - its like my body doesn't react if I change direction or the vertigo has my up/down mixed up. Cognitive issues with executive functionings - I know who I am, where I am - however, I can't figure out simple things like cooking a roast I've cooked thousands of times. I need everything broken down into simple steps. Everything is now written down as I have no memory of what I need to do. People I've met many times are a blank when I see them again - I can't remember their name and when they say "oh, you know me from blank" - I say, "oh right", but don't really remember who they are. I have TMJ and my jaw is getting more stiff. I'm incontinent. I don't have the tremors, but I do get these little quirks that my finger will twitch, or I'll get a muscle twitch - you can see it, but it doesn't hurt. My handwriting is getting smaller and sloppier all the time - if someone verified my signature, they would say its not the same signature as a year ago. Of course, Fatigue - I'm exhausted all the time. It seems that just lifting my arm is so tiring and no matter how much sleep I get, I'm still exhausted.

I know that there are other issues, but right now it's not coming to me. I am waiting a referral to a Rheumi - I'm not sure now this is the right specialist for PD - what speciality works with PD?

So, wanted to say hi - hopefully someone can offer some insight as to the possibility this might be PD - or if not, what they feel it might be.

12-22-2008, 03:39 PM

Just came accross this thread when doing a search for muscle twitches. I am guessing you have been tested for everything...but, could you have iron, magnesium, potassium, sodium deficiency?

Everything you are descringing can be symptoms of electrolyte imbalances, or many types of anamia.

Hope you are well as this post was made a couple of months ago.

12-22-2008, 06:10 PM

Thanks Steph - I got locked out and had to re-register.

How would I find out about my electrolites? I've had numerous blood tests and just don't seem to be getting anywhere. I even went for more blood tests today - so will find out next year the results. What tests would you suggest?

I just wonder sometimes if the tests that are generally given are sensitive enough to get the results - ie if you are slightly low - but they only catch it if you are extremely low.

12-23-2008, 08:38 PM

I think you are right about tests not being sensitive enough.

You can have low ferritin without being anemic and that can cause symptoms.

Have them check ferritin, b12, magnesium, potassium, iron levels, calcium, sodium, etc.

I am currently trying to find out what is wrong with me as well.

12-29-2008, 06:09 PM

Thanks Steph - I had my blood tests done - going to see my primary Jan 14 - I'm going to ask for a copy of the actual tests, so I can come back here and hopefully get some more information.

Hope you get some answers soon.

01-20-2009, 12:08 AM

Hi I only joined this site today and can’t believe the similarities that we all had getting diagnosed. Just like you they first told me I had carpel tunnel then they said I had a stroke then I had nerve ending tests and eventually they sent me to the Parkinson clinic in Gorsinon where after a 20 minns test the Dr told me I had Parkinson’s disease . It was a relief in a strange sort of way to know what really wrong .Cant you just ask to go for a Parkinson’s test, to put your mind at rest.
bubbley74

02-27-2009, 07:47 PM

NewBrunswick,

I dont know if you've posted since this post, but it would be a neurologist to find out if you have PD. But it seems you've already figured it out yourself, still you should see a neurologist.

I hope you can get some help so you will be steadier and not fall. I would be concerned with that most of all. Do you live alone?

CLSC

02-28-2009, 01:18 PM

Hi. My husband has PD, was diagnosed about 7 years ago. I find it strange you can't get a diagnosis. His neuroligist at the time diagnosed him in about 30 minutes.

02-28-2009, 01:27 PM

HI. I just joined this blog today. 2/28/09. My husband was diagnosed about 7 years ago. The neurologist he saw knew almost immediately what it was. His symtoms were very subtle. They involved a little loss of balance, drooling, stuttering. Our only medical insurance is via the Seattle Veterans Hospital. I'm finding one of the most difficult parts of dealing with this illness is trying to balance the meds. The side effects of the meds are almost worse than the illness.

03-15-2009, 11:19 AM

Quote:

Originally Posted by katerk

HI. I just joined this blog today. 2/28/09. My husband was diagnosed about 7 years ago. The neurologist he saw knew almost immediately what it was. His symtoms were very subtle. They involved a little loss of balance, drooling, stuttering. Our only medical insurance is via the Seattle Veterans Hospital. I'm finding one of the most difficult parts of dealing with this illness is trying to balance the meds. The side effects of the meds are almost worse than the illness.

now that i can actually post my message I,m too weak to sit here and type......really I was diag.about ten yrs. ago

03-16-2009, 01:25 PM

Katerek,

I just wanted to respond to you about the side effects of the meds being nearly worse than the illness. Now that we are 6 or 7 weeks into it (husband diagnosed Jan 26, Sinemet started the 27th & Azilect about a week later) we are both starting to question if adjusting medication might help to abate some of the more unpleasant problems he's gotten since starting medication.

Specifically, he has a very sore neck, due to the Azilect (according to the doc & literature) Also he's very sore in his legs and all over when he first wakes up, or after being immobile for a while) Before he started medicine, he had slowness in getting started, such as rising, but now it's pain, aching. Because he had spinal surgery 1 year ago it's confusing as to what is the source of the pain but muscle pain all over would not be the result of the surgery from a year ago. He did not have such pain the day before he started medication. What are the side effects of which you speak? (or those of Sinemet or Azilect?) Has anyone else experienced pain as a side effect?

Quote:

Originally Posted by katerk

HI. I just joined this blog today. 2/28/09. My husband was diagnosed about 7 years ago. The neurologist he saw knew almost immediately what it was. His symtoms were very subtle. They involved a little loss of balance, drooling, stuttering. Our only medical insurance is via the Seattle Veterans Hospital. I'm finding one of the most difficult parts of dealing with this illness is trying to balance the meds. The side effects of the meds are almost worse than the illness.

03-16-2009, 01:30 PM

Cindilou,

Welcome to the Forum and please continue to post when you can. Those of us who are trying to learn about PD, can learn a lot from those of you who have had the experience of living with this longer. I hope you'll be able to post again, now that you've gotten past the registration procedure.

CLSC

03-16-2009, 03:00 PM

Hi,

I have read your symptoms and they are very similar to mine. I have just been diagnosed with PD. The lazy leg, balance, forgetfulness, falling over, writing change.... it goes on. I am under care of the Neurology department. I had a DAT scan which confirmed my dopamin levels are very low.

Try getting your GP to refer you to Neurology!

Hope this helps!

Quote:

Originally Posted by newbrunswick

Ok, I started out 3 years ago with stoke like symptoms - had the MRI's, Cat scans, Lumbar punctures, blood work etc. They thought I had MS - but after all the tests, they feel its not likely. I'm a 45 year old woman - who until this has been healthy all my life.

Recently, my primary started me on Lyrica as she felt I might have Fibro. She then added Levodopa/Carbidopa recently to help with the restless leg syndrom. I'm exhausted all the time and running out of options on actually being a contributing member of society. Reading about PD, I now realize that I am in this category. I am also being retested for Lupus - as I have some of the hallmarks of that illness.

Here are my symptoms:

LEft leg is clumsy - drags and no reflexes when tested. It likes to cramp up in these strange shapes - if I tried to make my foot do it, I couldn't. Restless leg especially at night. I have little sensation in my hands and foot - have burned myself numerous times not realizing the bath water was so hot. I have chronic vertigo (currently taking Cerc). I walk very slowly - if you told me to hurry up, I couldn't. I walk with a cane as the vertigo makes me unsteady. I've fallen 5 times this year - its like my body doesn't react if I change direction or the vertigo has my up/down mixed up. Cognitive issues with executive functionings - I know who I am, where I am - however, I can't figure out simple things like cooking a roast I've cooked thousands of times. I need everything broken down into simple steps. Everything is now written down as I have no memory of what I need to do. People I've met many times are a blank when I see them again - I can't remember their name and when they say "oh, you know me from blank" - I say, "oh right", but don't really remember who they are. I have TMJ and my jaw is getting more stiff. I'm incontinent. I don't have the tremors, but I do get these little quirks that my finger will twitch, or I'll get a muscle twitch - you can see it, but it doesn't hurt. My handwriting is getting smaller and sloppier all the time - if someone verified my signature, they would say its not the same signature as a year ago. Of course, Fatigue - I'm exhausted all the time. It seems that just lifting my arm is so tiring and no matter how much sleep I get, I'm still exhausted.

I know that there are other issues, but right now it's not coming to me. I am waiting a referral to a Rheumi - I'm not sure now this is the right specialist for PD - what speciality works with PD?

So, wanted to say hi - hopefully someone can offer some insight as to the possibility this might be PD - or if not, what they feel it might be.

03-16-2009, 08:16 PM

Hi. I am still confused how to answer these blogs. My husband has PD for about 7 years now. I'll send this and see if I get a reply from someone. I'm anxious to talk and blog,; but have not had much luck.

03-16-2009, 08:29 PM

It's hard to figure out. esp; is it PD or all the other health problems,. At least with my husband he has worked so hard all his life and therefore has abused his body ie: shoulders, knees etc. The Dr's have determined now he has herinated discs pressing on his nerves in his lower back. So, we have to tackle this obstacle now.

Sorry, I'm not much help. But PD is a very, very complicated illness. Esp. trying to figure out and balance the meds. Thanks.

still trying to get a diagnosis

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