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Henny Penny

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Notme thanks- hoping that after the neuro clinic reviews my MRI's and progress notes they will steer me in the right direction as to whether neuromuscular Doc or surgeon- I know I will get an EMG-- just need an answer- good or bad so I can move forward, deal with what ever the diagnosis is and plan for whatever the future will hold. Again thank you!
 

LifesWorthLiving

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Pm me, i may know a place to seek answers...Nearby you, with qualified people, expieienced providers, that can help
 
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Henny Penny

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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 good time to have in your facility-Not) so I call on fri and speak to the same girl who confirmed on 1/20/12 that she did see my name on a fax cover sheet near her fax machine so must have received my records- that despite having a medical record number she couldn't locate my records- so could I please re-fax the information so that the NP can review it! Really a week later and can't find my records- so this entailed calling my PCP and requesting a refax- not sure if they completed this mission have to wait until tomorrow to call to see- I have been in health care for 28 years and feel so let down by my profession- I have been patient- with all the hypothesis of every physcian that has examined me- wore the hard cervical collar for 3 weeks that was a torture chamber and caused me to have horrendous headaches-have taken their pills that they don't even know what they are treating- just treating symptoms- so afraid of falling- and if I have a cervical reason for all my symptoms- fear a fall that could cause a spinal cord injury- that could have been prevented weeks ago if I had decompression surgery- tired of well meaning co-workers who keep asking what is wrong with me- and then providing their diagnosis- TIRED of BEING SO TIRED! For all of the PALS out there who had to endure years trying to get answers- got the run around by health care professionals- I am ashamed to admit that I belong to the profession- a profession that is suppose to be there to help those who are sick and in need. Everyone has told me "Get to Boston" Well guess what Boston has not proven to be any better at this point!
 

Ms. Pie

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I feel you Dear One. Sometimes it's more expeditious to pick copies up and drop them off yourself unfortunately. Sorry your having so much trouble!
 

Henny Penny

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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.
 

rose

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Finally getting the appointment is a start.

The waiting game is hard. Don't plan on hard fast answers even after you have your initial appointment. I don't think that people at large realize this. Your relatives, friends, and nosy neighbors all probably have expressed amazement that you are still in limbo. Ignore them.

As you work in the medical field you already know this, but, let me say it just to say it: There are NO real Dr House's out there!

It takes time. It can be excruciating. Take comfort in the fact that those who receive a quick (and accurate) diagnosis for MNDs generally are also those who have a quick progression.

Good luck to you!
 

trfogey

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It takes time. It can be excruciating. Take comfort in the fact that those who receive a quick (and accurate) diagnosis for MNDs generally are also those who have a quick progression.

What she said. With emphasis on "quick progression".
 

Henny Penny

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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 people that I know- they cannot even imagine it- Don't see the neurosurgeon evaluator until March 7th at Mass General- received the paperwork from his office- he will evaluate me, and provide recommendations to PCP will not order tests, or meds, will only make recommendations- I don't have a good feeling.
 

Henny Penny

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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 cervical myelopathy, despite no cord compression on MRI. My nights are becoming a living nightmare with awful muscle pain, twitching, spasms. My legs and arms are so heavy- I can barely drag myself out of bed in the morning to go to work. When I'm at work I keep moving all day and try not to sit for long periods except if I have a meetings, but this causes legs to swell somewhat so contributing to the heaviness. Has anyone experience early on the ability to move on own once you get stretched and limbered, and as long as you keep going the muscles work- but as soon as you sit for a length of time the muscles seem to seize up and getting up from sitting position like from the car is oh so difficult, or by the end of work, when I get home and sit and elevate for the evening the muscle pain, stiffness and fatigue hits like a tsunami. My body feels like it has ran a marathon every day by the end of the day- muscle fatigue, pain, stiffness-so ditressed, cry all the way home from work- hope I get some answers on wed. It will be a year on 3/31 that this odessy began with no answers.
 

AKmom

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608
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Diagnosis
11/2009
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You have described what I have been going though for years. But it is thought that I have pls by my to doc and a neuro doc, yet the docs at MAYO clinic say 'i don't know" and guess that maybe trying some drug that treats a certain diseases that they really think I do not have but it won't hurt for me to try it... Well you get the picture. It was a newbie doc that wasted my time and money there. Sorry your going through all this. Good luck with you appointment. I hope you get your answers.
They are treating me as if I have pls, and I still decline in ability. For me its a matter of doing the best I can with what I got for as long as I have it. Then when I cannot do something anymore, I figure out how to cope with it and focus on something else to keep me busy. Docs don't know everything, that's why they PRACTICE medicine.
 

notme

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Apr 3, 2011
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PALS
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08/2011
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Hon I could have written your last post--several of them actually--including neck crap and leg swelling and severe stiffness. If I sit more than an hour, I can barely walk.

I hate to say it--but I do think it's time to get your PCP to get you on short-term disability at work. What if that epi episode had been with a patient instead? You're not safe, are you? (even safe for YOU--not just the patients)

Nursing is hard work--I was only an EMT-I and ER Tech--but I know what kind of work it entails. I had to stop when I realized I was risking more than myself.

Not only that---your body needs the rest!

I'm not sure if you know it--but even compressed discs that have leaked can cause problems with the crap i side the discs irritating the nerves--but hon--I hate to say it--I don't think that's your problem.

I hoped it was mine--my neck is surgically fixable--but the neurosurgeon told me there was no point yet--because it's not capable of causing the symptoms I'm having--99% UMN, including spasticity, falling, + Babinski, hyper-reflexia, yada yada. 2 years later, i have no answers.

I hope you find something managable.
 

Henny Penny

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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 don't wish this on my worst enemy- but I don't feel like I'm crazy knowing there are others out there who are like me. I feel sometime that the Docs look at you and say Neurotic- almost 50 (20 days) perimenopausal woman- or maybe it's stress causing your symptoms- what do I have to be stressed about- I have a job I love, and I feel so priveleged to be a nurse who cares for our wonderful elders, a husband who has been by my side since we were Sr. in high school- who adores me, and is more domestic than I am 2 wonderful kids who are successfull, both my parents are still alive and independent who I am fortunate live only 3 miles away- I have nothing to complain about that would cause this "perfect Storm" in my body. Thank you for listening, and sharing will update you after my appointment on wed.
 

st123

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Good luck Wednesday, Penny!
 

notgivnup

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Will be hoping for the best for you penny at wednesday's appt.
 

notme

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Good luck tomorrow. I hope they at least get on the road for answers. I really wish I could say I thought you were just fine and go stop thinking about neuro diseases...but I can't.

But remember---there are a LOT of things out there besides ALS. UMN could well be PLS--which has a much better prognosis--but would also mean slow diagnosis.
 
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