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Help with diagnosis


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#1 GreenT

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Posted 16 June 2013 - 07:22 AM

Hi,

I am a 37 year old new member to this forum. I have been experiencing Parkinson-like symptoms for the last 18 months and have been reading this forum regularly. My father has Parkinson's and am very familiar with the symptoms. I have seen two neurologists - both saw the tremors but do not want to start any medication and seem to be waiting for the symptoms to worsen. The symptoms affect both sides and the intensity fluctuates. It's affecting my ability to do simple tasks at work and home. The tremors, body pain/fatigue and sleep problems bother me the most. I attend a lot of meetings at work and these tremors are embarrassing. The doctors' non-acceptance of the issue makes me wonder if it's all in my head!

Would you suggest I just wait it out or do you have any good MDS in the New York/New Jersey area?

Any help would be appreciated.

Thanks

#2 Luthersfaith

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Posted 16 June 2013 - 07:40 AM

Wish I could help. Some doctors of medicine are dumber than rocks! You need to see if drugs give you relief.
"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#3 LarryH0123

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Posted 16 June 2013 - 08:58 AM

Aloha Green T and Welcome!

Is one of the neurologists a movement disorder specialist (MDS)? The first neurologist I saw also took the wait and see approach which I found very frustrating. Once I found an MDS, she took a much more proactive approach and I started to get better quickly. I am now on Azilect 1mg. and Neupro Patch Rotigotine 8mg. She also sent me to physical therapy and I had already begun to see a chiropractor before I saw her. She recommended I continue with the chiro.

The meds I'm on help the tremors to be less frequent and less intense but they are still there. I also found if the meeting I am in is stressful, the tremors get worse. I too was initially embarassed by the tremors in meetings. I began to share with select individuals that I trust that I may have pd (later that I do have pd once I was certain) and that helped me to be less self conscious about it.

There is a lot of strength and support on this forum. I wish you the best in your journey.

#4 Beau's Mom

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Posted 16 June 2013 - 09:33 AM

Welcome, Green T. For the best information on an MDS in your area, call the NPF Helpline and they can tell you who to call. I believe the number is listed on the Home Page.

Edited by Beau's Mom, 16 June 2013 - 09:36 AM.

Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#5 sarahjo

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Posted 16 June 2013 - 11:11 AM

welcome GreenT, listen to these great ppl on here, the advice has help me in so many ways, the only thing I would add that has help also is exercise, its uncomfortable, and a pain at times, but helps. also it took them 8 years to finally get it with me, so I do pray you get answer soon. Bless you, Also Happy Fathers day to all you fathers out there. have an amazing day.

#6 sarahjo

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Posted 16 June 2013 - 11:12 AM

also about exercise, doesn't matter how much just do some, helps you keep going.

#7 MTYOPD

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Posted 17 June 2013 - 12:59 PM

My wife has been going to Dr Fekete in Valhalla NY (@ Westchester Medical Center about 20 minutes north of NYC). She is 44 and diagnosed last year. we are happy with him. Link to his info http://parkinsonologist.com

#8 christie

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Posted 18 June 2013 - 07:58 AM

GreenT, you should definitely consult a movement disorder specialist. Regular neurologists have limited experience with young onset Parkinson's and may be very reluctant to diagnose you. Your symptoms-regardless of their exact cause-should be addressed, since your quality of life is affected.

PS: you family history of PD does not necessarily suggest you have PD too, especially if your father did not have young onset Parkinson's. (At what age was your father diagnosed? Was he older than 50?) Genetic parkinsonism is extremely rare even among patients with YOPD. Most of us with young onset disease have the garden variety of idiopathic PD most commonly seen in older folks...I truly hope your tremors are caused by something much more "benign" than PD. On the other hand, if you end up with a diagnosis of PD, you should know that young onset Parkinson's has a relatively slow rate of progression and you might be able to lead a relatively normal life almost for decades...

Edited by christie, 18 June 2013 - 07:59 AM.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#9 GreenT

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Posted 23 June 2013 - 01:43 PM

Thank you all for your replies. I am seeing a MDS currently, but he wants to wait for the symptoms to worsen. It is quite frustrating - the first MDS i saw thought it was dystonia and gave me a terribly high dose of Primidone which made me sleep for 2 days. So when i went to see the second MDS, he totally disregarded dystonia. Isn't dystonia one of the symptoms of YOPD? I definitely feel my quality of life is getting affected - especially when i have to keep my calm being a mother to 2 little children and handling a stressful job!

I will try to see Dr. Fekete or another MDS from the NPF helpline... but honestly i'm tired of fishing around.

#10 Daven

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Posted 23 June 2013 - 03:50 PM

GreenT,

The others are right on the mark in seeking out a MDS. My first Neurologist/MDS worked in a very busy practice, and unfortunately just didn't have time to spend with me. He was taking the wait and see approach. After a bit, he did prescribe me Mirapex which just put me to sleep. He refused to listen to me when I complained that I was a sleeping all of the time. All he cared about was that my tremors were controlled, see you in three months. My new Doctor spent a fair amount of time examining me and concluded that I do have Parkinson's. I think that's half the battle, not knowing for sure.

You'd be surprised how much people don't notice your tremors. Most of the time, even my wife doesn't notice them. People are so busy with there own lives that they just look pass the everything.

I hope you find a doctor who is willing to spend the time to figure things out with you.

Dave

#11 Ed Cowan

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Posted 06 July 2013 - 11:56 AM

i feel your frustration i have been seeing nuro's for years do to a seizure disorder and while for the last few years no one would even pay attention to the tremors or other issues, then i seen a new one and she was like wow you have Parkinson's with in minutes

#12 chelle

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Posted 06 July 2013 - 11:49 PM

I agree a MDS should be your next step. I was misdiagnosed for two years. Its not in your head. Trust your instincts. Good luck and God Bless

#13 StrawberryShortquake

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Posted 29 July 2013 - 08:50 PM

Hi All:

I'm a new member, 38/F. I am not officially diagnosed, but the neurologist I've been seeing for an ongoing post-viral illness and who I saw a few years ago for what was diagnosed as essential tremor (then treated effectively with Topamax) has prescribed Sinemet, which is what my father takes for his Parkinson's Disease treatment. I have some questions for everyone.

First, has anyone here been diagnosed following a virus-like illness or any other illness? From what I've read, it seems odd. Would it be likely that a bad virus would speed up onset or bring out new Parkinsonian symptoms?

I've had a tremor since I was about 30, but it was mostly my hands (both) and was treated effectively via Topamax. My doctor had me discontinue that medication when I consulted him again for neurological symptoms that developed during my virus. They included dizziness, ataxia due to weakness in legs (both), cognitive impairment, tachycardia, a near syncope episode, and muscle twitching. Discontinuing the Topamax has brought back my tremors, which are not limited to my hands now. Some feel internal, including in my skull at times), and some are visible; these are worsened by physical exertion and mental stress. The leg weakness also is increased by physical exertion.

I don't see all of these symptoms listed in typical PD symptoms, and I haven't noticed muscle rigidity. Though my doctor is a MDS and says I have some Parkinsonian characteristics, I'm wondering if the description of my symptoms/condition sounds like PD to all of you or if it sounds not at all like your experience. My father has been treated for a few years now but doesn't experience much dizziness or cognitive impairment.

Lastly, how long after you first started your PD meds did you feel any relief? I began Sinemet last Wednesday and have not yet felt any effects.

Thank you very much for any insight and guidance you can provide! I really appreciate it.

#14 chelle

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Posted 30 July 2013 - 02:48 PM

Hi All:

I'm a new member, 38/F. I am not officially diagnosed, but the neurologist I've been seeing for an ongoing post-viral illness and who I saw a few years ago for what was diagnosed as essential tremor (then treated effectively with Topamax) has prescribed Sinemet, which is what my father takes for his Parkinson's Disease treatment. I have some questions for everyone.

First, has anyone here been diagnosed following a virus-like illness or any other illness? From what I've read, it seems odd. Would it be likely that a bad virus would speed up onset or bring out new Parkinsonian symptoms?

I've had a tremor since I was about 30, but it was mostly my hands (both) and was treated effectively via Topamax. My doctor had me discontinue that medication when I consulted him again for neurological symptoms that developed during my virus. They included dizziness, ataxia due to weakness in legs (both), cognitive impairment, tachycardia, a near syncope episode, and muscle twitching. Discontinuing the Topamax has brought back my tremors, which are not limited to my hands now. Some feel internal, including in my skull at times), and some are visible; these are worsened by physical exertion and mental stress. The leg weakness also is increased by physical exertion.

I don't see all of these symptoms listed in typical PD symptoms, and I haven't noticed muscle rigidity. Though my doctor is a MDS and says I have some Parkinsonian characteristics, I'm wondering if the description of my symptoms/condition sounds like PD to all of you or if it sounds not at all like your experience. My father has been treated for a few years now but doesn't experience much dizziness or cognitive impairment.

Lastly, how long after you first started your PD meds did you feel any relief? I began Sinemet last Wednesday and have not yet felt any effects.

Thank you very much for any insight and guidance you can provide! I really appreciate it.



Welcome.... I'm 31/F at 29 I was misdiagnosed with essential tremors. The meds never helped me till I started sinemet. That made all my symptoms disappear however my MDS took me off because she said "since its the best out there its best to delay as long as possible". The other parkinsons meds made me crazy. Im currently taking zoloft for anxiety and flexeril for pain and cramping in my legs. I never had any worsening of symptoms after a virus but its my understanding if u dont respond to sinemet that chances are u dont have parkinsons. I pray for ur sake u dont. My symptoms started as tremor in left hand then my whole left side. I currently have tremors in my left side and right hand. I do feel the tremors inside where i dont think they can be seen especially in my head. I hope they figure it all out soon. This forum is amazing. Its been the only place I can say exactly how I feel. The people on here are great and will support u 100%. I should say that stress does make it worse for me. God bless ttyl
Chelle

#15 StrawberryShortquake

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Posted 31 July 2013 - 10:13 AM

Hi Chelle:

Thanks so much for your reply. I'm glad this community is here and that everyone supports each other; that's so important. I wonder if most neurologists diagnose essential tremor first to see if Parkinsonian-type symptoms can be treated without prescribing Sinemet or other Parkinson's meds. You and I have the same story about ET diagnosis.

After a week on the Sinemet, I'm starting to feel a little less dizzy, weak, and a little more mentally present. I still have episodic tremors, though.

Does the cramping in your legs you describe feel like a small knot of muscle, and do you have muscle spasms in your legs? Or is it all over and prevent you from using your legs? Also, how do you like the Zoloft for anxiety? Is it effective for you?

Thanks again for the warm welcome, Chelle. I hope you have a good day. :)

#16 chelle

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Posted 31 July 2013 - 11:46 AM

Hi Chelle:

Thanks so much for your reply. I'm glad this community is here and that everyone supports each other; that's so important. I wonder if most neurologists diagnose essential tremor first to see if Parkinsonian-type symptoms can be treated without prescribing Sinemet or other Parkinson's meds. You and I have the same story about ET d. gnosis.

After a week on the Sinemet, I'm starting to feel a little less dizzy, weak, and a little more mentally present. I still have episodic tremors, though.

Does the cramping in your legs you describe feel like a small knot of muscle, and do you have muscle spasms in your legs? Or is it all over and prevent you from using your legs? Also, how do you like the Zoloft for anxiety? Is it effective for you?

Thanks again for the warm welcome, Chelle. I hope you have a good day. :)



Zoloft is great for me. I know some people can't take it cause of the side effects. I still have some bouts of depression but I started zoloft for anxiety and the depression periods have just started lately. I was only diagnosed in Jan so I think sometimes I get depressed when I think about my future even though I try hard to stay positive.

As far as the pain in my legs.... my toes curl in and my legs and feet cramp. I do every now and then have spasms in my thighs but its definitely more cramping.

I know u didn't ask about this but when I get spasms in my head its like my skin around my temple area is moving back and fourth. I also have eye spasms that cause headaches blurred vision, double vision and sometimes my eye closes all together (blepharospasm). My husband says when my eye closes and he pulls it open u can see my eye moving back and forth. At the eye doctor the other day he said because of PD my eye muscles are week and don't track well therefore causing double vision.

Idk if they always first misdiagnose with essential tremors. It was a regular neurological dr that diagnosed ET. I told him multiple timea that my symptoms didn't match up. My tremors are more resting tremor and with ET its more when ur doing things. My husband talked me into getting a second opinion and thats when i went to my now MDS who ran test just to rule out other things but said she had no doubt it was YOPD. I go back to her on aug 21 to get my results from genetic testing and im praying for my kids sake its not a genetic issue with me.

Well I hope you have a good day. Let me know if I can help with anything else.

Chelle




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