Confused and Frustrated

[momap53]

Our thoughts and prayers will be with you tomorrow. Hope you get some answers.

 

[guguy]

Best wishes for good news from your appointment.

 

[marypat]

Henny penny, I will be thinking of you and saying prayers for you tomorrow. I too am a nurse and had my PCP tell me that a CPk of greater then 1200 ways just a funny little thing that would straighten itself out. I never let my neuro out of the room until I had asked him everything I can think of and then ask my husband what he wants to ask. Good luck

 

[Henny Penny]

Thank you everone for your well wishes- you all have given me comfort during this frustrating time- here's hoping that I get some answers or direction tomorow. Bless you all!

 

[AKmom]

be sure to write down all your questions and topics you would like to discuss before you go. Then take notes of what he/she says about different things. I bring my hubby with a laptop to be my secretary and take notes. Praying you have a successful visit!

 

[Henny Penny]

Had my appointment with the neurosurgeon today at MGH. He ruled out that my neck is not the issue. Spine is fine. So wore a cervical collar for 10 weeks for no reason. He was a wonderful evaluator spent an hour and a half examining me, reviewing every head MRI and Neck MRI twice. He said that my clinical presentation is very perplexing, have more negatives than positives. I have definate significant weakness to the left side. still have the babinski sign, hyporeflexic, failed all balance tests. He kept saying looks like a progressive neurodegenerative condition, no specific diagnosis. So he is recommending an updated head mri to focus on the cerebellum area, for atrophy as all my head exams are going on a year old, and a spinal tap. I asked him to recommend a neurologist at MGH and he recommended a Dr. Venna-he said he loves a challenge and a zebra. so will give him a call tomorrow to see if he will see me sooner rather than later. Really was hoping I would go in today and they tell me pinched nerve, cervical myelopathy...so the unknown and waiting game continues.

 

[momap53]

So sorry you're still waiting. I'm sure it was a comfort to get such a thorough exam. Good luck with the next step and keep us posted. We'll keep you in our thoughts and prayers.

 

[marypat]

Henny penny, I'm sorry you don't get answers. I hope you feel like you were heard. Good luck on further testing. I'll keep you in my thoughts and prayers

 

[HelenL]

sorry you didn't get the "easier" answers, but sounds like you're in excellent hands. Keep us posted, and stay positive.

 

[CathyP]

All I can say is hang in there. Try and focus on all the good things each day brings instead of the bad.