I just need answers.

Posted by sbrokenshire @sbrokenshire, Feb 3, 2019

I have been dealing with a great deal of health issues since 2013. I lost my sight centrally in my left eye 6 months post bariatric surgery. They tried them to DX me with MS. After several test and MRI’S I came out with no DX and no answers. Following the loss of my sight in the left eye I had horrific headaches that have continued daily since. I see an optic neurologist who has Dx me with chronic reoccurring optic neuritis. My right eye is just about as bad as the left now although I do regain some of the site back after several months. Since 2013 I have gone through a great deal of back pain, hip pain and numbness, leg pain, sciatic pain and now in 2018 started with arm pain, neck pain and numbness. I have been through back surgery, carpal tunnel surgery, but still come out with all the pain. With the optic issues in this world I have now been sent to pain management. I had upper and lower EMG’s done which showed nerve impingements in the L5 region and 3 cervical entrappmenta. They recently did an epidural
On the lower portion which proved to be very painful but u successful. They have me on norco and gabapectin. I can say there is no relief. My visit to the optic neurologist last week has me now going for a MOG lab test. He informed us in Jan of 2018 that if I continue to show signs as mentioned above I would most likely be looking at NMO or MS. My neurologist finds this absurd but is doing absolutely nothing. Pain management refuses to do any more than they are at this point. I am due for this blood test on Monday. I live in a rural area and I am waiting on the hospital to understand how to do this and where to send. Never the less the pain is unreal. I am suppose to take 4 norco a day and 3 gabapectin. I am not afraid to say this does not work and I am finding myself trying to take more and running out early just to deal with this. Has anyone here who has been Dx with either NMO or MS found themselves having what I have described? Please tell me how to deal with this. I am getting minimal sleep, can not work and have not for 2 years, and it is driving me insane. I have a new frandbaby and I find that my functionality is so poor I am struggling to drive the 2 hours just to see him. Please help if anyone can.

Sheila

Hello @sbrokenshire. that is certainly a lot of symptoms and potential diagnoses to be thinking about and dealing with. If you don't mind, I am going to share some other discussions with you that may help you Connect with members who are experiencing similar things based on each thing you mentioned above. If you'd like, I recommend taking a look and participating if you feel comfortable in the following discussions or groups:

https://connect.mayoclinic.org/group/eye-conditions/
https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/
https://connect.mayoclinic.org/discussion/sciatica-pain/
https://connect.mayoclinic.org/discussion/chest-pain-thoracic-pain-intermittent/

That is quite a few discussions and one group that I suggested, but each may offer a bit of insight and some members who are experiencing some of what you are. You may have mentioned it and I may have missed it, but what does NMO stand for? Seeking a diagnosis can be long and frustrating, but one thing members continue to coach one-another on Connect is to keep pushing and advocating for yourself, and it sounds like you are doing that.

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@sbrokenshire Have you seen a chiropractor? Mine helps me with Back problems ,neck and sciatica he releases the nerves At home I use a Tens Unit

Liked by Leonard

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@lioness

@sbrokenshire Have you seen a chiropractor? Mine helps me with Back problems ,neck and sciatica he releases the nerves At home I use a Tens Unit

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Thank you. I will call tomorrow to see if I can get in.

Liked by lioness

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@JustinMcClanahan

Hello @sbrokenshire. that is certainly a lot of symptoms and potential diagnoses to be thinking about and dealing with. If you don't mind, I am going to share some other discussions with you that may help you Connect with members who are experiencing similar things based on each thing you mentioned above. If you'd like, I recommend taking a look and participating if you feel comfortable in the following discussions or groups:

https://connect.mayoclinic.org/group/eye-conditions/
https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/
https://connect.mayoclinic.org/discussion/sciatica-pain/
https://connect.mayoclinic.org/discussion/chest-pain-thoracic-pain-intermittent/

That is quite a few discussions and one group that I suggested, but each may offer a bit of insight and some members who are experiencing some of what you are. You may have mentioned it and I may have missed it, but what does NMO stand for? Seeking a diagnosis can be long and frustrating, but one thing members continue to coach one-another on Connect is to keep pushing and advocating for yourself, and it sounds like you are doing that.

Jump to this post

Thank you so much for all the information you shared. NMO is neuro myelitis optics. A horrific disease I am hoping I do not have.

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@sbrokenshire Thanks for NMO explanation hope you don't have it

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Sheila, I am a Mayo patient. I wish I could help you.

I have two questions for now:
how does weight-loss surgery cause a loss of sight?

A doctor (not at Mayo) once told me, "A patient has to be an advocate for their own health." I assume he meant that the patient has to tell each doctor exactly how the patient feels, and what the patient wants, because doctors can't guess what is on a patient's mind.

Also, doctors are hesitant to give out much pain medication, because they are either afraid that patients will become addicted to the pain medication, or because they mistakenly think the patient has nothing wrong with them, and instead is a drug addict.

So they often won't do it unless the patient makes sure that
everyone treating them knows EXACT:LY what they have been diagnosed with, reads their ENTIRE medical record, starts to understand just how RELENTLESS their pain is, and how THE PATIENT'S LIFE depends on getting relief from the pain.

You may have to write and call and send messages to your doctors over and over and make sure that everyone who sees you gets the message, that YOUR LIFE DEPENDS ON GETTING ENOUGH RELIEF.

Is your pain making you suicidal? If you are, tell them!

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