I am a 28 year old male who has been to very good doctors over the last nine months, and I am not a hypochondriac nor one to doctor shop. Please let me tell everyone my background. About two years ago I experienced extreme stiffness in my right pectoral muscle. I had it reoccur a few times over the period. In September of 2012 I went to the emergency room because I felt the stiffness and could not breathe. However, nothing was found in the emergency room after chest ct, ekg, etc. I continued to have extreme stiffness in the center of my chest which accompanied shortness of breathe. I went to a very good pulmonologist who ordered PFT which were better than normal. Finally, in December of 2012 I was admitted to the hospital because the stiffness gradually turned into extreme chest weakness and back weakness. I had full consult from Neuro, Pulmonologist, Cardiac work up, liver work up etc. They found lesions in my spinal canal at T8 and L4, and a dilated central cervical canal. They ran a bone scan which was negative. Subsequently, I went back to Pulmo who did sniff test, MIP, MEP, FVC ad everything was in the normal or better range. Since January I have had persistent muscle weakness in chest and back, and have to sleep with my head elevated on two pillows. I went to second neuro who said clinical exam was fine, and did emg of both arms, right peck, and right shoulder. He concluded is was completely clean. Finally, as my weakness persisted I decided to travel out of state to Beth Israel Als Clinic to see the head Neuro there. He did a clinical exam, and noted 3 plus reflexes and level 3 clonus in my ankles with positive Hoffman sign. However, he performed EMG on right arm, scapula, thoracic back, diaphragm, intercostalm and right pectoral and the results are completely clean. He noted not one irregularity on the emg, no fibs, positive waves, nothing. He did about 10 sticks, and said it was more than enough with my complaints. He ran full blood panel including glutamic acid, and head MRI which were all normal. He told me that there is no way it is ALS because there is absolutely no lower motor involvement, and at the level of weakness I feel in my chest and back there is no way an emg could be completely clean. I am so frustrated I do not know what to do anymore, and I will buy a Bipap to help me breathe. His conclusion was that I had some type of viral infection that may have attacked upper motor neurons and caused this situation. Also, he said I could have upper motor neuron problem, but there is no definitive test for it. I have not had any progression since December but my chest feels caved in, and it is hard to breathe. I have no stamina, and prior to this I worked out daily and could bench press over 300 pounds. Please tell me if upper motor neuron damage could cause isolated weakness in the chest and back. I still have spasticity than weakness and the pattern continues. The spasticity is not as extreme, just weakness. I do not have any atrophy in my muscles My right peck is extremely sore to the touch and I have pain on a daily basis. I just do not know what to do anymore as I suffer daily, and do not want to get up as my chest feels caved in. My wife and family do not listen to me, and I know something is very wrong and I have even accepted ALS. I just want help, and I feel for everybody on this board, and agree that neuros are useless, and we are all on our own. Please tell me if upper motor neuron damage could attack me in this way. At this point, I am tired of doctors and just want to get Bipap and live on. I have seen 3 Neuros, and none have definitive answer. Als specialists did listen and did not brush off my sympthoms, but said not ALS, and in his opinion never will be. He told me it could be a problem in motor cortex of my brain, or a virus that made neurons go crazy. I just do not know what to do at this point, any advice would be appreciated. I wish everyone the best, and I am not a coward like some who post. I have tried to get help, but no answers.
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ottawa girl
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That's quite the story. No wonder you feel frustrated! The good news is ALS is not causing your symptoms. PHEW!
While I do not share your view that neuros are useless, I will tell you that there are many members on this site, who despite their best efforts, have yet to be diagnosed. Some for years. The body and brain, in particular, are so highly complex that it's little wonder not all conditions can be identified. Heck, we PALS have been waiting for a cure for over a century. I hope that you will re-think your decision not to see doctors again. Why not try the Bi-pap for awhile and see if you feel better. Do keep in touch with your GP. I would urge you to keep a journal and record how you feel and any symptom you may have. If I were you, I would also record how much sleep you've had or not had and any particular stressor that day. In three months, go back to GP and review the journal together. Perhaps a correlation between symptoms and events may be identified. Sometimes, a wait and see is the only thing we can do. Strange but true.
I'm sorry that you do not feel supported by your family. Take heart - it's very hard for our families and friends to understand everything. You should also know, if there was any chance that your demise is imminent, I think all 3 neuros would have noticed something.
Hang in there! I'm hopeful more experienced and savvy members will opine soon.
While I do not share your view that neuros are useless, I will tell you that there are many members on this site, who despite their best efforts, have yet to be diagnosed. Some for years. The body and brain, in particular, are so highly complex that it's little wonder not all conditions can be identified. Heck, we PALS have been waiting for a cure for over a century. I hope that you will re-think your decision not to see doctors again. Why not try the Bi-pap for awhile and see if you feel better. Do keep in touch with your GP. I would urge you to keep a journal and record how you feel and any symptom you may have. If I were you, I would also record how much sleep you've had or not had and any particular stressor that day. In three months, go back to GP and review the journal together. Perhaps a correlation between symptoms and events may be identified. Sometimes, a wait and see is the only thing we can do. Strange but true.
I'm sorry that you do not feel supported by your family. Take heart - it's very hard for our families and friends to understand everything. You should also know, if there was any chance that your demise is imminent, I think all 3 neuros would have noticed something.
Hang in there! I'm hopeful more experienced and savvy members will opine soon.
vickim
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Hello
Unfortunately we are not drs. Did they do any mris? My first thought with the lesions on the spine is M.S. I am sorry you are going through this. There is no one test to determine an illness, it is a process of elimination and time.
It may take months, even years to get answers. It took me 5 years. Patience is required. If a expert neuro told you it wasn't als then I would say you are safe in crossing that off your list. There are many other things it could be. All you can do is keep searching and in the mean time keep a journal of the symptoms and when they start, stop, how long they last and what you were doing. It will give a time line for the drs. The next piece of advice I will offer is to continue to live your life. Enjoy what you can.
The answers are out there, but that doesn't mean you sit around waiting for them. Live, love, laugh and enjoy.
Unfortunately we are not drs. Did they do any mris? My first thought with the lesions on the spine is M.S. I am sorry you are going through this. There is no one test to determine an illness, it is a process of elimination and time.
It may take months, even years to get answers. It took me 5 years. Patience is required. If a expert neuro told you it wasn't als then I would say you are safe in crossing that off your list. There are many other things it could be. All you can do is keep searching and in the mean time keep a journal of the symptoms and when they start, stop, how long they last and what you were doing. It will give a time line for the drs. The next piece of advice I will offer is to continue to live your life. Enjoy what you can.
The answers are out there, but that doesn't mean you sit around waiting for them. Live, love, laugh and enjoy.
I thank both of you for your responses. I am trying to keep living the best that I can, and I have a child due in September so I am trying to focus on my career and my family as much as I can. I also both a spirometer so I can check my FVC and FEV, and peak flow at the advice of the respiratory consultant at the center. I will heed your advice and continue to see my GP as he is an excellent doctor and does care about my situation. I am just happy that the ALS specialist did listen to me and did note that something upper motor neuron is probably going on. Thanks for your help, and I really feel for the MND community. I am an attorney and regardless of the outcome of my situation, I want to offer Pro Bono services to the MND community, and to use my profession to help lobby or further research for people inflicted with these terrible diseases.
CRR10,
What was your MIP cm H20 value and what was it expressed as a % of expected results? You said your pulmonary values were in the normal range, but I'm wondering what the exact MIP value was with the shortness of breath issues, which I have too.
What was your MIP cm H20 value and what was it expressed as a % of expected results? You said your pulmonary values were in the normal range, but I'm wondering what the exact MIP value was with the shortness of breath issues, which I have too.
Nighthawk
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Yes, that's right. You should check what your MIP value is because if could offer some clues if you have had shortness of breath or something similar related to your breathing.
NH
NH
Nannette RC
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Have you considered going to Mayo Clinic in Minnesota? I believe they would be able to help you. It is an incredible place.
My MIP value was over 80. The machine I used had a maximum value of 80. My FVC is 100%. However, posture has changed because chest is caved in. I have no atrophy but is is almost like my chest was pushed in towards my back. I am so frustrated that I am getting Bipap and may just see what happens. I have not had any progression in 4 months since this started. Terrible stiffness in chest and back with alternating weakness.
I have considered going to Mayo, but I have also come to the conclusion that if it it ALS, or some strange variety of MND, what are they really going to do for me. I am just so tired of doctors at this point. I know it is MND, and kind of want to get Bipap and take my chances. I am not a hypochondriac at all, and neuro does believe some type of motor neuron problem, and said he has never seen anything like it before. I saw Dr. Scelsa at Beth Israel, and he wanted to refer me to Rothstein at Hopkins because he said this is be of the weirdest neuro issues he has ever seen. He thinks it could be some unusual form of PLS that started in the chest.
Nighthawk
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Hi,
I don't yet have a BiPAP myself because I feel I can breathe without too much difficulty so far.
However, I believe that BiPAP's machines can only be gotten upon a Pulmonologist's prescription. I might be wrong on this assertion, though. Perhaps other forum members (either PALS or CALS) with more experience on BiPAP's could chime in with more accurate information for you.
Kind regards,
NH
I don't yet have a BiPAP myself because I feel I can breathe without too much difficulty so far.
However, I believe that BiPAP's machines can only be gotten upon a Pulmonologist's prescription. I might be wrong on this assertion, though. Perhaps other forum members (either PALS or CALS) with more experience on BiPAP's could chime in with more accurate information for you.
Kind regards,
NH
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