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Question about Sclero & Parkinson's


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#1 danelledawn

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Posted 21 July 2008 - 09:42 AM

Hi all this is my first post on here, I've had sclero, raynaud's, shrojrens, fibro, and lupus diagnosis ten years ago. Mine has held pretty steady, but since our move to Wyoming two years ago, it seems as if all of them flew into high gear.

I've had alot of stress in the last few years also the climate here is so different from NC, so maybe that has something to do with my non stop flare's.

My rheumatologist is one who beleives that we treat as I show more, so far it has been working I guess. So about a year ago I had the worst pain in my ribs that would double me over. Well went to many Dr's for a year to end up back at my primary care physician and decided to check my gallbladder. Well it has doubled in size so it needs to come out. On top of that they did a scope and found that I had a hugh ulcer that was not treatable by meds, also found that I'm starting to get the scarring in the esphous(sp). Got the ulcer healed and will have surgery on the 4th of Aug thank goodness.

In June I went home to see family that I had not seen in three years, the first thing they all said to me is why you shaking like that even my brother who doesn't notice those things noticed. Then when I came back after two weeks my husband noticed it also. So I was on the phone with my mom and I was talking to her about it, since my dad's sister alway's shook like that and my dad did also but not as bad. Well my mom finally tells me what made them both have those tremors with there hands. Seems that my aunt has very severe parkinson's and dad's was never diagnosis. It's terrible to say that I did'nt know but we did not see my aunt alot as I was growing up. So my mom tells me that I should have it checked out just in case. Went to the primary care physician explained everything to him and gave me the once over. So I'm waiting to hear that it was nothing (I tend to wait out symptons to see if they go away), well that was'nt what I got. He said that I am showing tremors and something with my ankles and feet. Seems now that I may be showing early signs of parkinson's but he's sending me to a neuro for a complete check.

So has anyone else have had this happen to them, if so please let me know how it's went. I walked out of the office pretty shocked and I keep asking myself is it possible to have so many things going on in one body.

I would love any advice and thanks for listening to me

Danny
So proud of my hubby and boys
Danny

#2 Peggy

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Posted 21 July 2008 - 11:02 AM

Welcome! I'm glad you found us and you will find this is a great place to go to for advice and compassion and listening ears. I am so sorry that you have found you have an additional disease. I don't have Parkinson's myself but I also have many diseases other than sclero and also have a marker that has my doctor watching for lymphoma which they say will show up at some point in time. I do hope that maybe you will find that you don't have Parkinson's and maybe it's another effect from the sclero. I have found that this disease affects people in so many ways and is ever-changing all of the time. Please keep us posted on what you find out and again Welcome!

Warm hugs,

Peggy

#3 Purr

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Posted 21 July 2008 - 11:09 AM

Hi Danny,

First of all, welcome to the forum. Second, I'm sorry to hear everything has started flaring up on you. :( I have raynauds, lupus, scleroderma, and polymyositis. And, I think sjogrens has reared it's ugly head. Don't know what to tell you about the tremors except that I have them once in awhile. It can happen any time of day. Usually I notice it more in the morning, so I've been blaming it on medication. I don't know anything about Parkinsons, but I'm sure someone in the group will have information for you. You've come to the right place. :)

Take care,
Christy
Love makes the world go around!

#4 razz

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Posted 21 July 2008 - 03:38 PM

Welcome Danny!

I am so glad to see you posted on this informative and supportive forum. It is so good to see a familiar face and I love your picture! Having to deal with multiple diseases, and now this new symptom, takes a lot of patience and perseverance. I do admire your strength and endurance.
Since everyone here is so helpful and the researchers are great, hopefully someone will chime in with some information. Any time you have questions or need to vent, someone's ready to listen.

I haven't experienced any type of shaking and was also wondering if it could be medication-related. I'm hoping your doctor doesn't diagnose Parkinsons as the reason for the shaking.

Keep us posted!

Hugs from your friend,
Razz
:)
Live well, Laugh often, Love much

#5 luvbnmom3

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Posted 22 July 2008 - 12:34 AM

Hi there, sorry you're dealing with more stuff, it is frustrating when things get added onto what we already deal with!

I recently had been dealing with lots of tremors & shaking & all sorts of things that looked like Parkinson's, come to find out (& I figured it out myself, my Neuro was sending me to a University doctor) my body suddenly quit tolerating the Adderall XR I've been taking for a few years, so I have unknowingly been overdosing myself on it! At least that appears to be the case; as soon as I stopped it, the symptoms all have gotten much better. Taking any G.I. alkalinizing agent can amplify the amphetamines in the Adderall, increasing blood levels. So, food for thought if you're taking a combination of anything like that!

I hope your doctor gets to the bottom of things for you quickly & you start feeling better!

#6 danelledawn

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Posted 22 July 2008 - 04:39 AM

Thanks everyone for welcoming me and the advise. I am crossing everything in hopes that these tremors are something else and not parkinson's. I will see the neuro for the consult on the 13th of Aug, it was sooner but being on the 5th and me having surgery for the gallbladder on the 4th of Aug was going to be a problem.

What's funny is that I have'nt noticed it but everyone else has, so I must be adjusting to it without even thinking about it. I can't ask my dad any questions about his because he passed in 1994.

So for the time being I'm just going to focus on getting my gallbladder out and recovering from that and then deal with it.

Again thanks for the welcome
Danny
So proud of my hubby and boys
Danny

#7 debonair susie

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Posted 22 July 2008 - 05:12 AM

Hi Danny,

I'm really glad you've found your way here, too. It just seems to be the "thing that happens"...other chronic illnesses, "jumping on the bandwagon"...and without an invitation, too :unsure:

I have the "REST" of CREST/Scleroderma, Fibromyalgia, Sjogren's, Trigeminal Neuralgia, Costochondritis, Angioedema, Psoriatic Arthritis/Psoriasis...if there are others, they won't be listed, here! B)

I've had neck problems for many years, which migrates into my shoulders often. My mother does also. So, we each have the "shakey head thing" going on and I notice when she gets excited or upset...her head shakes even more. I don't beleive that happens withme, but I may end up doing the same, as I age.

I hope that your gallbladder surgery goes well and thatt when you do go to the neurologist, you're able to get treatment that helps.

Hugs,
Susie
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#8 Sweet

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Posted 22 July 2008 - 10:11 AM

Hi Danny,

Welcome to the Sclero Forums! I'm so glad you've joined us. I'm so very sorry to hear of your multiple diagnoses, in addition to the new tremors symptoms you are having. I don't have any great advice fro you, but I wanted to welcome you and I'm looking forward to knowing you better.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 danelledawn

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Posted 14 August 2008 - 04:40 AM

Well I just want to thank you all for all the support and well wishes. I seen the neuro yesterday and I don't have parkerson's, I do have a tremor disorder but I will take that and I am so happy I could jump to the moon.

The treatment for it if I want it is a blood pressure medcine, but he said I really did'nt need it yet. So I can wait on that I did'nt want another medicine added to me again.

Thank you guys so much for all of the support it really helped me so much
So proud of my hubby and boys
Danny

#10 razz

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Posted 14 August 2008 - 05:36 AM

Danelledawn,

That's fantastic news that you don't have parkinson's. What a relief knowing this is something you don't have to worry about. I am very happy for you!



Hugs,
Razz

:)
Live well, Laugh often, Love much

#11 jefa

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Posted 14 August 2008 - 06:08 AM

I am sure you are very relieved, Danny. I'd like to add my belated welcome to our group.
Warm wishes,
Jefa

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#12 Peggy

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Posted 14 August 2008 - 06:10 AM

CONGRATULATIONS!@ CONGRATULATIONS! CONGRATULATIONS! I am sure you are so excited. I know that I am for you! This is such good news and such a relief I am sure.

Good news is always great to hear!

Warm hugs,

Peggy

#13 CraigR

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Posted 14 August 2008 - 06:31 AM

Danny,

Good that you don't have Parkinson's. I've had tremors since I was a teenager (about 35 years ago), diagnosed as "benign essential tremor" (BET or ET) which seems to mean "we don't no what causes it, but it doesn't seem to get worse". I've heard that this can be hereditary. I take Inderal (Propanalol [sp?]) if I need help (rarely) with it - probably the same medicine your doctor recommends.

I'm not a doctor, but here is something I researched that can distinguish these tremors:
Parkinson's has a "resting" tremor and BET has an "intention" tremor. This means that with Parkinson's, you are more likely to notice the tremor at rest, such as in an arm that is resting freely at your side. The BET intention tremor tends to be more noticeable when you use the muscles, such as when lifting a full cup. or otherwise raising your arm.. The head may also shake, since the muscles holding the head up must have some tension.

I've heard that this (BET) is quite common, and famous people with it included Katherine Hepburn and Ronald Reagan.

It is also said that alcohol can reduce the tremor, which sometimes encourages abuse. For me, alcohol does not seem to have any effect (on the tremor, that is!).

Craig

#14 danelledawn

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Posted 14 August 2008 - 07:54 AM

Thank you all so much, it's was such a releif that I did'nt here the actual name of what it's techinally called because I was over joyed at the great news.

It is such a great thing when we get good news and I had to let you guys know and wanted to thank you for such support. It is so great to know that such wonderful people are here to support each other.
So proud of my hubby and boys
Danny

#15 Purr

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Posted 14 August 2008 - 09:38 AM

Wonderful. I love it when someone gets good news!!!!

Christy
Love makes the world go around!