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CRR10

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Hi everyone, and thanks for the warm support that I have already received on this forum. I am just looking for support and encouragement as I am feeling really down today. I currently have an Undiagnosed MND that has caused my chest to collapse which has given me severe trouble breathing. It started with extreme spasticity in my chest over the course of 3 months which lead to severe weakness. I have seen three neuros including Two ALS specialists at Beth Israel and Hopkins. I had two EMG's performed which included about 7-10 sticks. I had my right shoulder, bicep, tricep, right pectoral, diaphragm, upper back and mid back done. Each muscle including peck was given one stick, the neuro did twist the needle in the muscle.Each emg lasted only 20 minutes, but the doctors seemed to think they were through enough. I requested the print outs from the emg and they are completely clean, no fibs, decreased recruitment, sharp waves etc. The doctors told me that with the level of weakness that lower motor neuron signs would have shown if they were there. However, the doctors did note several upper motor neuron signs in the clinical exam including positive Hoffman, clonus, and 3+ reflexes. The doctor at Beth Israel said that he believes that I had a virus that attacked upper motor neurons and caused this to happen. The doctor at Hopkins said unknown MND and never seen before. They both concluded cannot diagnose as ALS. I know this is a good thing, however, the sympthoms are so severe as I am currently on Bipap as my respiration is declining. I discussed the possibility of a vent with both doctors as I want to live as long as possible as the rest of my body is okay. Furthermore, even if I become more disabled I will continue on with vent and peg as I value life and I am only 28 years old. I feel like my life is over as both doctors encouraged that I do not vent if it becomes necessary and said I may have respiratory failure within 12 months. I am not about to die at 28 years old and found them to be unsupportive especially since I clearly expressed my wishes. As an attorney I have put everything in writing. I feel like my life is over, thus could someone please tell me that with a vent that I could go on to live a lot longer and there is something to be hopeful for. Also, I understand that no one this forum is qualified to give medical opinion, however I would appreciate opinions regarding the thoroughness of the EMG's. I feel like both doctors have given me a death sentence without any kind of valuable advice. I have had every test performed including full back MRI, 64 slice chest ct, EKG, echocardiogram, brain MRI, and enough blood panels for a lifetime. The only thing uncovered was a dilated cervical spinal canal and lesions in the spinal canal, not the cord at t8, t9, and l4. They ruled out cancer with the bone scan according to the doctors. I am honestly very frustrated with the medical community and feel like I am on my own. I have zero support from my family and my wife just wants to live in denial. How long can someone survive on vent, and why would these doctors tell a 28 year old to basically die if they need one. I am sorry for venting but, and do not want to offend anyone who have been given definitive ALS diagnoses, but I have something really scary going on. Also, in everyone's opinion could upper motor neuron problems cause this severe of damage? Thanks for any input. I do have really good insurance and financial support so I can vent if necessary.I feel for this whole community, and as an attorney would like to offer Pro Bono work and advocate on behalf of the MND community.
 

Nikki J

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Mar 22, 2012
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I am sorry for all you are going through. Since you have not got a specific diagnosis it seems it would be hard for anyone to predict the course of your MND. I have no wisdom to offer re vent. I would if I were you consider a third opinion. I do not know which Beth Israel you went to but I do have experience with Hopkins and Mass General. Mass General is FAR more proactive than Hopkins. I think if you post twice more you can private message. Feel free to pm me if you want to ask more about MGH
 

CRR10

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Thanks for your insight and once I reach another post I will PM you,as I am interested in learning about Mass General.
 

kiara

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Nov 29, 2012
Messages
69
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Ita
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CR
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Crema
I'm really sorry for you and I don't understand why doctors don't want you to go on a vent. It's your life and you have the right of living it as long as you can even on a vent. Here in Italy all doctors have the duty to vent every patient that is in respiratory failure unless he has chosen previously not to be vented while he signed his living will. I'm sure they cannot refuse to vent you if you want it. I read that one doctors mentioned the possibility of a virus so why didn't you have a spinal tap? And what about some rare methabolic disease? If I were you I will seek for another opinion, your symptoms are really atypical, it's strange for MND to start with breathing problems.
 

Nighthawk

Senior member
Joined
Jan 17, 2013
Messages
831
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PALS
Diagnosis
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Maryland
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Anne Arundel Co
I think Mass. General has likely more access to ALS drug trials than Johns Hopkins does from what I've seen. I am a JHU patient by the way, and the majority of times I have requested to be enrolled on a drug trial at the Clinic, their response is that there are none at the moment and they only give some handouts to attend to conferences (?), just that.


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Cricket

Distinguished member
Joined
Feb 10, 2013
Messages
166
Reason
PALS
Diagnosis
07/2011
Country
CA
State
ON
City
Ottawa
Hi, i would suggest to go see and read joelc's blog. He shares his experience using a vent. He did a lovely job and it is very informative.
 
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