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Good afternoon,

This is the first I write in this forum.  I'm a 47 years old female, In late February I started to have a twitch in my left thumb, after a week I want to see my neurologist who's is a MDS and he has been seeing me for almost 3 years (for other reasons) and he diagnosed me with Parkinson's, as you can imagine I was in shock and could not believe it, I went for a second opinion with a MDS and he ordered a DatScan, I received the results on 05/03 and it was negative, the MDS told me that for now he could not diagnosed me with PD and that I had to come back in 4 months, he did not see my tremors because is sporadic and comes and goes, some days I do not have them at all but they're still there, I had a third opinion last week with a very famous MDS and he also told me he that he could no diagnosed PD, in the neurological test he did not find rigidity and balance problems and my tremor was not present.  I feel so bad because I have this pulsations all over my body (now in my right foot)  the tremors come and go and they are at rest, the tremors are now in my right thumb and index finger and they come and go, I have an urgency to urinate that is ridiculous, I have anxiety, my sight is blurry, I get dizzy when I stand up, my legs and back hurt and sometime my right shoulder hurt so bad I can't move it, etc...  The most worrying is the feeling I have inside my body about the pulsations and twitching especially when I go to sleep, everything moves. I guess I'm just starting and developing symptoms and I want to know if this happens to all in the beginning, I'm exercising almost every day and trying to eat better but I can't stop worrying that one day I will wake up with tremors in all my body.  Please help me because I sometimes feel nobody believes me and I'm not making up symptoms, I just want to know if you guys felt this in the beginning and if it is normal to have PD and have a regular neurological test. 

Thank you for your help, sometimes I feel I do not have the energy to get out of bed and my mind is full of anxiety because I do not know what is wrong with me.

Elena

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Tremor all over body happened to me too.  I felt like I was shivering for three months. Only lying perfectly still made it stop. I think I spent most of three months in bed. While you’re waiting for a diagnosis you might want to get a bottle of  dopabean (natural source l-dopa)at a health food or a vitamin store. The enteric coating on the Solaray brand helps. For me, two capsules every hour and a half made my body tremor stop. 

Not everyone gets useful information from the scan. Parkinson’s can take years to diagnose and progresses very slowly. There’s really no hurry to get diagnosed except the desire to know and how helpful a prescription of l-dopa is at relieving stiffness.

You know something is very wrong and you want to know for sure what it is and have people understand and believe you. That’s how I felt.You can get the understanding here on the forum. We believe you! There’s so many weird, seemingly unrelated symptoms going on it’s hard to believe it’s all from one disease.

I thought Brain Storms was a good book understanding Parkinson’s.

 

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On 7/3/2018 at 5:38 AM, Sherrie said:

Tremor all over body happened to me too.  I felt like I was shivering for three months. Only lying perfectly still made it stop. I think I spent most of three months in bed. While you’re waiting for a diagnosis you might want to get a bottle of  dopabean (natural source l-dopa)at a health food or a vitamin store. The enteric coating on the Solaray brand helps. For me, two capsules every hour and a half made my body tremor stop. 

Not everyone gets useful information from the scan. Parkinson’s can take years to diagnose and progresses very slowly. There’s really no hurry to get diagnosed except the desire to know and how helpful a prescription of l-dopa is at relieving stiffness.

You know something is very wrong and you want to know for sure what it is and have people understand and believe you. That’s how I felt.You can get the understanding here on the forum. We believe you! There’s so many weird, seemingly unrelated symptoms going on it’s hard to believe it’s all from one disease.

I thought Brain Storms was a good book understanding Parkinson’s.

 

Thank you Sherrie for your response,

It's been a rough couple of months without knowing what is happening to me. For the last three weeks I've been having fasciculations all over my body, specially in my calfs and legs, I feel them in my torso, upper arms, feet and face. To be honest I don't know what else to do, the las MDS referred me to a neuromuscular neurologist but he can see me until October so the wait is on. For now my family doctor prescribed Buspirone for anxiety because I've been having a tough time, I did not wanted to take it but I started last week so I can relax a little bit until October. I guess the Dat Scan and normal neurological exam is the criteria the MDS are using to not diagnose PD. Is it possible for a PWP to have a normal neurological exam and have PD? I really appreciate your feed back, lately I feel nobody believes what is happening to me, everybody keeps saying to go on with my life but is not that easy, I'm the one living in this body and the fasciculations are non stop, especially at night. I can tell you that now that I've been reading about Parkinson"s  I admire and have a lot of respect for you all, you are brave and resilient and I hope I can have that kind of spirit and strength.

I wish you a wonderful rest of the week.

Elena 

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7 hours ago, Dr. Okun said:

Thanks for the comment!

Good evening dr. Okun,

Are fasciculations a symptom of PD? Can you have a normal neurological exam in the beginning of PD? 

Thank you for your help,

Elena 

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