Aa
Hoping for guidance
One day in March I started having this uncomfortable feeling in my chest. This feeling gradually became worse and by the time the night came I was having problems breathing and severe pain in my chest. When I laid down I couldn't breath unless I laid on my left side.
I went to the emergency room the next morning because I had pain radiating down my left arm, nauseau and vomiting as well. When I got the the hospital my blood pressure and pulse were elevated 150/100 and 100+ bpm.
I'm only 28 so a heart attack was unlikely. An EKG was performed along with a chest x-ray and everything looked fine. They gave me shot of a pain killer and told me to follow-up with my primary care. A few days later the same thing happened again and this time I was admitted because my blood pressure was really high. They performed another chest xray, a thalium stress test, EKG and more and everything looked fine. They gave me a nitro patch and a shot of some morphine and told me I probably had gastroentritis.
Since then I have these episodes where I get really tired, I have pain that radiates through my arms. Sometimes it's burning sometimes it's stabbing. Sometimes I have a tingling sensation all over, muscle twitching, sometimes I have numbness in my hands. Very rarely I may have problems controling my hand or I may have a hard time writing.
Over the past few months I've been having problems with my right eye and then most recently pain in my legs.
I was diagnosed with Optic Neuritis and sent to a Neurologist.
I had a MRI of my Brain and everything looked normal. I had an evoked Potentials test and they said it was borderline that there was a small lag in response in my right eye compared to my left. I had a Nerve conduction velocities test on my right side and there was one nerve in my leg that didn't respond but other than that the neurologist said everything was fine and a EMG on my right arm and the neurologist said that was normal.
My blood work has come back normal except my ESR & CrP were elevated and also the doctor said I have blood alkalosis so she has referred me to a Pulmonologist.
She hasn't done a lumbar puncture. She said one is not needed because the MRI of my brain is fine.
I've had my primary care doctor refer me to the Mayo Clinic where I am on the waiting list at the moment.
My question is does this sound neurological or pulmonary? My neurologist is convinced that the neurological symptoms I'm having are a result of a non-neurological condition or she has even said that it may be that we are unable to find the cause. She has also told me that I definitely don't have MS and I definitely never will.
I'm hoping someone with a little more experience my be able to provide some guidance. Even though these episodes come and go and I feel much better when I'm not having them, I feel terrible when I do have them. During the episodes my fatigue causes me to sleep frequently which is hard because I have a 1 1/2 year old. The pain is no fun and at it's sometimes hard to work during the episodes because I have a hard time concentrating. Any help is greatly appreciated.
I went to the emergency room the next morning because I had pain radiating down my left arm, nauseau and vomiting as well. When I got the the hospital my blood pressure and pulse were elevated 150/100 and 100+ bpm.
I'm only 28 so a heart attack was unlikely. An EKG was performed along with a chest x-ray and everything looked fine. They gave me shot of a pain killer and told me to follow-up with my primary care. A few days later the same thing happened again and this time I was admitted because my blood pressure was really high. They performed another chest xray, a thalium stress test, EKG and more and everything looked fine. They gave me a nitro patch and a shot of some morphine and told me I probably had gastroentritis.
Since then I have these episodes where I get really tired, I have pain that radiates through my arms. Sometimes it's burning sometimes it's stabbing. Sometimes I have a tingling sensation all over, muscle twitching, sometimes I have numbness in my hands. Very rarely I may have problems controling my hand or I may have a hard time writing.
Over the past few months I've been having problems with my right eye and then most recently pain in my legs.
I was diagnosed with Optic Neuritis and sent to a Neurologist.
I had a MRI of my Brain and everything looked normal. I had an evoked Potentials test and they said it was borderline that there was a small lag in response in my right eye compared to my left. I had a Nerve conduction velocities test on my right side and there was one nerve in my leg that didn't respond but other than that the neurologist said everything was fine and a EMG on my right arm and the neurologist said that was normal.
My blood work has come back normal except my ESR & CrP were elevated and also the doctor said I have blood alkalosis so she has referred me to a Pulmonologist.
She hasn't done a lumbar puncture. She said one is not needed because the MRI of my brain is fine.
I've had my primary care doctor refer me to the Mayo Clinic where I am on the waiting list at the moment.
My question is does this sound neurological or pulmonary? My neurologist is convinced that the neurological symptoms I'm having are a result of a non-neurological condition or she has even said that it may be that we are unable to find the cause. She has also told me that I definitely don't have MS and I definitely never will.
I'm hoping someone with a little more experience my be able to provide some guidance. Even though these episodes come and go and I feel much better when I'm not having them, I feel terrible when I do have them. During the episodes my fatigue causes me to sleep frequently which is hard because I have a 1 1/2 year old. The pain is no fun and at it's sometimes hard to work during the episodes because I have a hard time concentrating. Any help is greatly appreciated.
First, thank you so much for taking the time to help.
I definitely plan on ditching the neurologist. I've just continued seeing her in the meantime while I'm waiting for an appt at the Mayo Clinic. I don't know if she was trying to make me feel better by telling me that I will never have MS, but I personally prefer someone especially a doctor to be honest with me and if that is what she honestly believes than apparently she doesn't know what she's talking about.
The ESR was only slightly elevated for my age. I believe it was 29. I'm unsure about the CRP. She didn't give me the exact numbers. I've been trying to get a copy of my lab results so I can keep them in my folder. I've been making notes and trying to keep everything together. For some reason the doctors aren't sharing information very well amongst themselves. I'm very frustrated with her office staff at the moment, but I will be stopping by there next week to pick up copies of all the results.
I don't have any joint pain. Heat and Stress tend to make the episodes worse. I get extremely tired if I'm out in the heat for to long. I'll go home and sleep for 3+ hours and then feel a little better.
As far as the blood alkalosis is concerned, no doctor had mentioned that previously. This came from the lab work done a few weeks ago. I wasn't having any chest pain at the time. I was having pain in my legs and a very weird feeling that is hard to explain. I had this shaky, tingling sensation all over, and I was having a hard time concentrating. I also had numbness in my ring and pinky fingers on my left arm. My right bicep was twitching for 4 days straight.
I'm not sure if I think the first chest pain in march is related to everything thats going on now. I still get pressure in the chest from time to time during the episodes, but nothing like what happened then.
Until now I haven't really been keeping track of all the tests that were run (stupid me). Everytime I would start feeling better, I would think that everything was over. For a couple of months, I told myself everything was in my head.
These are the other blood tests that were done recently all came back normal:
ANA, RF, B12/folate, glycosylated hema-globin, ACE, double standed DNA, ENA, C-ANCA, P-ANCA, homocysteine, PT/PTT.
I copied those from my lab orders before I have the lab work done so I may have misspelled.
When my MRI was done that did say that I have sinus disease and that my left sinus was opaque. Both my primary care asked me if I have any sinus pain and I told them no. I don't have any facial pain or headaches. The headaches that I've had in the past were a few months ago and started behind my right eye which I think might be related to Optic Neuritis or maybe the decrease in vision in that eye.
A cervical MRI without contrast was performed in April when my first major episode of arm pain began because they thought a problem in my neck might be causing it. They said that looked normal.
The funny thing about all of this is that the doctors didn't really pay attention to my arm pain until I went to the Optometrist. I went for my annual eye exam and told him about my decreased vision in my right eye. He looked and and said I had a swollen optic nerve and referred me to an Opthamologist who then looked, did a few test and an angiogram (I think that's what it's called) and said that I had a mild case of Optic Neuritis. He asked me a bunch of questions and told me he thought I had MS. That's when the doctors became interested. After the brain MRI came back clear and the lab work didn't give any specifics it seems as if everyone is uninterested once again.
I guess I need to find a doctor who likes a challenge.
Oh one other thing I wanted to mention. I've been doing a lot of online reading as I'm sure you can imagine. I recently read about L'Hermitte's sign. I think I have that. When I tilt my head down I can feel a sensation all the way down my back. Sometimes I can feel that sensation down my arm usually not both arms at the same time but the arm varies when I do feel it in my arm. I haven't mentioned that to my doctor yet. Is that specific to MS or do other disorders/problems have that as well?
I definitely plan on ditching the neurologist. I've just continued seeing her in the meantime while I'm waiting for an appt at the Mayo Clinic. I don't know if she was trying to make me feel better by telling me that I will never have MS, but I personally prefer someone especially a doctor to be honest with me and if that is what she honestly believes than apparently she doesn't know what she's talking about.
The ESR was only slightly elevated for my age. I believe it was 29. I'm unsure about the CRP. She didn't give me the exact numbers. I've been trying to get a copy of my lab results so I can keep them in my folder. I've been making notes and trying to keep everything together. For some reason the doctors aren't sharing information very well amongst themselves. I'm very frustrated with her office staff at the moment, but I will be stopping by there next week to pick up copies of all the results.
I don't have any joint pain. Heat and Stress tend to make the episodes worse. I get extremely tired if I'm out in the heat for to long. I'll go home and sleep for 3+ hours and then feel a little better.
As far as the blood alkalosis is concerned, no doctor had mentioned that previously. This came from the lab work done a few weeks ago. I wasn't having any chest pain at the time. I was having pain in my legs and a very weird feeling that is hard to explain. I had this shaky, tingling sensation all over, and I was having a hard time concentrating. I also had numbness in my ring and pinky fingers on my left arm. My right bicep was twitching for 4 days straight.
I'm not sure if I think the first chest pain in march is related to everything thats going on now. I still get pressure in the chest from time to time during the episodes, but nothing like what happened then.
Until now I haven't really been keeping track of all the tests that were run (stupid me). Everytime I would start feeling better, I would think that everything was over. For a couple of months, I told myself everything was in my head.
These are the other blood tests that were done recently all came back normal:
ANA, RF, B12/folate, glycosylated hema-globin, ACE, double standed DNA, ENA, C-ANCA, P-ANCA, homocysteine, PT/PTT.
I copied those from my lab orders before I have the lab work done so I may have misspelled.
When my MRI was done that did say that I have sinus disease and that my left sinus was opaque. Both my primary care asked me if I have any sinus pain and I told them no. I don't have any facial pain or headaches. The headaches that I've had in the past were a few months ago and started behind my right eye which I think might be related to Optic Neuritis or maybe the decrease in vision in that eye.
A cervical MRI without contrast was performed in April when my first major episode of arm pain began because they thought a problem in my neck might be causing it. They said that looked normal.
The funny thing about all of this is that the doctors didn't really pay attention to my arm pain until I went to the Optometrist. I went for my annual eye exam and told him about my decreased vision in my right eye. He looked and and said I had a swollen optic nerve and referred me to an Opthamologist who then looked, did a few test and an angiogram (I think that's what it's called) and said that I had a mild case of Optic Neuritis. He asked me a bunch of questions and told me he thought I had MS. That's when the doctors became interested. After the brain MRI came back clear and the lab work didn't give any specifics it seems as if everyone is uninterested once again.
I guess I need to find a doctor who likes a challenge.
Oh one other thing I wanted to mention. I've been doing a lot of online reading as I'm sure you can imagine. I recently read about L'Hermitte's sign. I think I have that. When I tilt my head down I can feel a sensation all the way down my back. Sometimes I can feel that sensation down my arm usually not both arms at the same time but the arm varies when I do feel it in my arm. I haven't mentioned that to my doctor yet. Is that specific to MS or do other disorders/problems have that as well?
Hi, what an awful thing to be going through! Welcome to our haven of the Undiagnosed, the Misdiagnosed, the recently Diagnsosed and the Diagnosed and Not Happy About It. I'm afraid your post leaves me with more questions than insight, but I'll try. I am a physician, no longering practicing, and am not a neurologist nor a pulmonologist.
The first and recurrent episodes I don't understand. It sounds like a viral infection like pericarditis, which can cause excruciating chest pain, which is patially relieved positionally, and can mimic a heart attack. there is also pain with breathing along with it. It can be missed by routine tests. I assume you saw a cardiologist.
The subsequent things are interesting in the context of MS - which I cannot diagnose - but I can talk about what you told us in those terms.
I'm going to jump right to the end (of your post) and tell you to dump this neurologist, for two reasons. If she said "you don't have MS" and even implied that you never will, she doesn't know much about MS. First, you've been diagnosed with Optic Neuritis which has a strong association with manifesting MS subsequently. In a person with ON and nothing else (no MRI lesions, no other symptoms, no other postive tests) there is a 33% chance of MS developing in the next 2 and 1/2 years. As you follow these people out 8 to 10 years the percentage of people that will show full-blown MS rises to 42%. With those numbers, it's certainly not a sure thing, but hardly will support a promise that it is never to be in your future.
The seocnd reason is that I, personally, mistrust physicians who warn their patients ahead of time that "they may never find out the cause. I think that is medical-speak for "I don't intend to try very hard." Or it may be the cynicism of someone who has failed to find a lot of causes for stuff. Somethings, like chronic hives, really do evade finding a cause most of the time.
With the documented ON you also need (along with the new neuro) an MRI of the spine - cervical and thoracic - done with and without contrast. That's just basic work up.
The elevated ESR & CRP are both nonspecific indexes of inflammation. This points away from MS. How high was the ESR? An intensive work up for an inflammatory process is needed. Do you have any joint pain? Rashes, heat or cold intolerance? The alkalosis in your blood. Has this been persistent? Was it during the episodes of chest pain? If it was, it might just be the effects of hyperventilating and being in pain. Hyperventilation is a temporary cause of alkalosis. Were there any other abnormalities on your blood work?
Those are my inital thoughts, rule out pericarditis, good to be checked out by the pulmonary guy if the alkalosis is persistent, change neurologists, get an MRI of the spine. Look for the source of the elevated inflammation (it is unlikely to be MS)
I encourage you to stick around and talk, answer the questions I asked and keep us posted as stuff comes in.
Quix
The first and recurrent episodes I don't understand. It sounds like a viral infection like pericarditis, which can cause excruciating chest pain, which is patially relieved positionally, and can mimic a heart attack. there is also pain with breathing along with it. It can be missed by routine tests. I assume you saw a cardiologist.
The subsequent things are interesting in the context of MS - which I cannot diagnose - but I can talk about what you told us in those terms.
I'm going to jump right to the end (of your post) and tell you to dump this neurologist, for two reasons. If she said "you don't have MS" and even implied that you never will, she doesn't know much about MS. First, you've been diagnosed with Optic Neuritis which has a strong association with manifesting MS subsequently. In a person with ON and nothing else (no MRI lesions, no other symptoms, no other postive tests) there is a 33% chance of MS developing in the next 2 and 1/2 years. As you follow these people out 8 to 10 years the percentage of people that will show full-blown MS rises to 42%. With those numbers, it's certainly not a sure thing, but hardly will support a promise that it is never to be in your future.
The seocnd reason is that I, personally, mistrust physicians who warn their patients ahead of time that "they may never find out the cause. I think that is medical-speak for "I don't intend to try very hard." Or it may be the cynicism of someone who has failed to find a lot of causes for stuff. Somethings, like chronic hives, really do evade finding a cause most of the time.
With the documented ON you also need (along with the new neuro) an MRI of the spine - cervical and thoracic - done with and without contrast. That's just basic work up.
The elevated ESR & CRP are both nonspecific indexes of inflammation. This points away from MS. How high was the ESR? An intensive work up for an inflammatory process is needed. Do you have any joint pain? Rashes, heat or cold intolerance? The alkalosis in your blood. Has this been persistent? Was it during the episodes of chest pain? If it was, it might just be the effects of hyperventilating and being in pain. Hyperventilation is a temporary cause of alkalosis. Were there any other abnormalities on your blood work?
Those are my inital thoughts, rule out pericarditis, good to be checked out by the pulmonary guy if the alkalosis is persistent, change neurologists, get an MRI of the spine. Look for the source of the elevated inflammation (it is unlikely to be MS)
I encourage you to stick around and talk, answer the questions I asked and keep us posted as stuff comes in.
Quix
I hope someone will jump in here that knows about all this kind of stuff. I do hope things get better and they can find out what is causing all of this.
I'll be praying,
Carol
I'll be praying,
Carol
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