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Serenity Now

Still In Limbo....No Dx

10 posts in this topic

I saw a neurologist, at a teaching clinic, but I'm still in limbo.  He recognized my balance issues, and said I had weakness in my left hand.  To get a reflex in my left knee, he whacked it so hard that it hurt.  Last time I was at the clinic, it took them 4 tries to get one.

He was only concerned with constipation, but he didnt care about my other non-motor symptoms, like insomnia, loss of smell, small/sloppy handwriting, etc.  He also wasn't concerned with my lack of arm swing, my blurry vision or my tongue movements that occur with my tongue at rest and sticking it out.  

After he examined me, he said there is some neurological isssues, but he didn't know what.  Then he said it was nothing serious. 

He wanted me to see the autonomic specialist. But after he talked with the specialist, who never examined me, he said it was functional. I asked for a referrral to MDS, but he declined.  However, he said I had neuropathy.  

All of my symptoms, which started 10 years ago for some non-motor, did I even connect that they could be related until a few months ago. Plus, when I noticed in summer my arm stopped swinging, I thought it wss weird, but didn't think about more about it.  Therefore, I don't think it's functional. 

The neurologist was very young, so I wonder if he is in his residency, or if he has much knowledge of PD.  Therefore, I'm going to find another neuro or wait until  i have more symptoms.  

If my situation sounds familiar it's because I was previously here with a different username.  I left because not sure if I belong here since I'm still in limbo.  I just wanted to update you since you were so kind to offer your insight and experiences.  

 

 

 

Edited by Serenity Now

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Serenity Now,

Please know that many of us have been in your shoes. If it is PD, time will tell. Meanwhile, you can begin an exercise regimen that suits you. That has been proven to be neuroprotective. You can find information on alternative practices like changes in diet, stress reduction techniques, meditation, and mindfulness. These practices have helped me tremendously as my PD has progressed.

If your insurance requires a referral for you to see an MDS, you can keep a log of your symptoms and continue to ask your Primary Care Physician and/or neurologist for a referral based on the data you record. There are apps for monitoring symptoms. One is from the Rocky Mountain PD Association. There is also a  free website called PatientsLikeMe that keeps all the information you put it and allows you to print charts and graphs to show to your doctors. 

Gather evidence and present it. It will give you something to replace the frustration and worry that lack of a diagnosis brings and may provide enough evidence to bring clarity to a situation that is often difficult to diagnose.

Dianne

 

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Serenity now,

I would find a neurologist that specializes in Movement disorders or PD.  There are medications that have seem to slow the progression of the disease doe some patients, if caught early enough.  It is certainly worth the effort.

Shirley 

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Thank you both for your replies and suggestions!!  Dianne, thanks for the websites.  I've been tracking systems for months, but a chart or graph would be great.

Shirley, thanks for your input.  In the area i live, the MDS' need a referral from a doctor.  But today, I found an MDS, 3.5 hours away, who will take self referrals.  

 

Edited by Serenity Now
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Start an exercise regimen now, regardless of your DX. I too had cervical neuropathy. My PD was found by accident during a procedure before my surgery to correct my neck. I too was in medical limbo for 3 months. It was awful so I can only imagine how frustrated you must be at this point. 

Keep a journal and take it to your PCP. Find a MDS you want to see. Be your own advocate and bring backup. I'm not as intimidated if I have someone with me who knows what my "plan" is for the appointment-tell them "don't let me leave until I ..." You can also send your records on your own to some hospitals. I sent mine and the doctors reviews them and I was contacted by the MDS best suited for me. It took awhile but it eventually happened. 

 

Don't give up. 

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Lad,

Thanks for your reply and insight!  I've been trying to exercise, and I no longer eat processed foods. Plus, I've stocked up on sunflower/pumkin seeds, and other foods with dopamine, in case I have PD. 

You are fortunate that your PD was discovered quicker than many.  I'm not sure which type of neuropathy I have since neuro just said neuropathy.  I tried showing him my journal, but he didn't care to see it.  I also went with a list of symptoms with a timeline.  Good reminder about being my own advocate, as someone also suggested when I was originally here. 

I just want to be taken seriously, as you and others can understand.  

 

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You could also post in the ask the doctor forum for advice on how to find a MDS on your own. Maybe there is a network of some sort you can look into.

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Lad,

i found an MDS, out of my area, who will take self referrals. It's funny you mentioned to use the ask the doctor forum since i posted a question in it earlier this wk (not answered yet) about how to get neuro to take my symptoms seriously.  Thanks again!   

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Welcome to the forum ,not exactly the place you wanted to be welcomed to . But there is a lot of info to be had here .It has definitely helped me . Hopefully your stay here will be short and you have something a little more minor . But the sooner you get checked by a MDS the sooner you can find out for sure . A DX of PD will be a kick to the soul but at least you will know for sure and stop the daily wondering ! If it is you can start the acceptance portion of the DX ,which isn't always easy but with support and knowledge it can be worked through and soon you can get back to being you .

Dan

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Thanks, Hunter Dan, for the welcome.  You are right with the amount of info that's here.  Hopefully, I won't have to come back here after seeing MDS in May, meaning no PD. Good luck to you and everyone else here. 

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