Recent content by Henny Penny

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    Hi Helen- Met Dr Chad today- he performed my needle EMG. What a lovely DR. very kind. I also...

    Hi Helen- Met Dr Chad today- he performed my needle EMG. What a lovely DR. very kind. I also like Dr Fridman who I saw last week- she is young and gave me a very comprehensive exam. No indication from either Dr. whether exam/Emg were normal or abnormal. Have a follow up appt. on May 3rd. For...
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    Hi Helen- Just wanted you to know that I got a call from MGH they moved my appt up to this wed...

    Hi Helen- Just wanted you to know that I got a call from MGH they moved my appt up to this wed on the 4th from June 26th- its not with Dr Chad but Dr. Freidman. I am just grateful its sooner rather than later. Not a good day today- arms and legs feel like a 1000lbs. started with cold in chest...
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    Hi Helen- heard from Dr. Chad's office today. He can't see me until June 26th. Also heard from...

    Hi Helen- heard from Dr. Chad's office today. He can't see me until June 26th. Also heard from Dr. Venna the other MD that was recommended- he is booking for August! so took the June appointment. I guess if he can tell me what is wrong or not wrong with me then it will be worth the wait...
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    Hi Helen- Just wanted to let you know that I am trying to get an appointment with Dr. Chad. The...

    Hi Helen- Just wanted to let you know that I am trying to get an appointment with Dr. Chad. The Neurosurgeon ruled out my neck as being my issue and is recommending further diagnostic testing, updated MRI of head, since they were done a year ago when I started all this, and spinal tap. I do not...
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    Confused and Frustrated

    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...
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    Confused and Frustrated

    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!
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    Confused and Frustrated

    Thank you both for sharing your journeys with me- I can't even imagine another year of doctor visits , MRI 's with no answers- I am sorry you both have had such long journeys, I feel guilty whining about a year of this. Not that I am glad that you both have similar symptoms than I, because I...
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    Thanks Helen - I'm seeing a Dr. Wilkinson- he is out of the neurosurgery department- they tell...

    Thanks Helen - I'm seeing a Dr. Wilkinson- he is out of the neurosurgery department- they tell me he just does evaluations- he does not operate anymore- he recommends treatments, does not prescribe, and doesn't see you in follow up- so I guess he will determine where I go next- I am hoping that...
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    Confused and Frustrated

    Have my first appointment at Mass General on Wed. the 7th- finally! I am not trying to put all my eggs in one baske. They set me up with a neurosurgeon evaluator who will make recommendations. My PCP / old neurologist are the ones who referred me to neurosurgery first, for what they feel is...
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    Confused and Frustrated

    Night time is my enemy- once I stop for the day my muscles seem to seize up- spasms, twitching, and legs feel like they weigh a hundred pounds. I can only get about 3 hours of sleep-I have a constant vibration in my left foot. How do you explain the extreme exhaustion that I am feeling to the...
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    Kathy the neurologist at Mass General is a neurosurgeon as they want to rule out cervical...

    Kathy the neurologist at Mass General is a neurosurgeon as they want to rule out cervical myelopathy- his name is Dr. Wilkinson- they told me he will perform the evaluation and then determine whether it is a cervical issue or if I need to be referred to MND doc. I have been wearing the soft...
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    Confused and Frustrated

    Finally got an appointment at MGH- March 7th was the earliest. It's with a Neuro that is going to Screen me I am told and then go from there..the waiting is agonizing.
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    Confused and Frustrated

    I am so frustrated- have been trying to get an appointment at Mass General since 1/18/12- was requested to have my records faxed to them- which my PCP did by 1/20/12- called every day except thursday- as I was so tied up during work hours with the department of Publis Health (which is always a...
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    Nursing homes that don't take ALS patients?

    PamelaSue- I have worked in Long term care since 1994 and have cared for several ALS patients- vented and no vent. There are very few Nursing homes that will take vented patients. Unfortunately the reimbursment from medicaid is awful, and the cost is high- chronic care hospitals will take...
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    I felt something special when I was reviewing all the photos on the MGH website- there must be...

    I felt something special when I was reviewing all the photos on the MGH website- there must be over 20 and his was the first Bio I read because I was drawn to something- read a couple of his papers/abstracts- haven't heard from MGH- they received my file friday afternoon- so didn't expect to...
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