Aa
i am so frustrated
I am stuck in limbo, and today after my f/u with my neuro I am more frustrated then ever...
a little back ground, I have had symptoms on and off for about 10 years... they come they go, new ones appear.. i have numbness and tingling in my right arm, part of my face right side, i loss my balance, i some days cant open a bottle or the refrigerator , i am exhausted, i get shocking sensations down my spine, i can bring this on myself if i put my chin down to my chest, i have a heat sensitivity, i cant take hot showers or be in the heat brings on symptoms, i have trouble finding words, plus many more to many to list.. but the newest ones are i have a burning hotness in my right thigh inner , my legs are going numb and tingling, plus i get this unbearable squeezing around my middle....
i was told in 2001 it sounded like i had ms. this came from an army dr they did their mri and it came back fine...
here we are 9 years later and its getting worse, my primary care sent me to a neuro, she immediatly after her in the office tests and speaking to me said, sounds just like ms, let me order some mris for you, now here i am in tears because i just am so frustrated and want an answer, she said dont be upset or frustrated if your results from the mri come back negative it takes time....
i had mri of t spine c spine and brain with and without contrast
so i went in for my results today, she said everything was negative there is no issue...spent literally 2 seconds with me and left... i am beyond mad!! i just dont know what to do anymore... episodes seem more frequent then when they started 10 years ago...and they are coupled with more and more symptoms
a little back ground, I have had symptoms on and off for about 10 years... they come they go, new ones appear.. i have numbness and tingling in my right arm, part of my face right side, i loss my balance, i some days cant open a bottle or the refrigerator , i am exhausted, i get shocking sensations down my spine, i can bring this on myself if i put my chin down to my chest, i have a heat sensitivity, i cant take hot showers or be in the heat brings on symptoms, i have trouble finding words, plus many more to many to list.. but the newest ones are i have a burning hotness in my right thigh inner , my legs are going numb and tingling, plus i get this unbearable squeezing around my middle....
i was told in 2001 it sounded like i had ms. this came from an army dr they did their mri and it came back fine...
here we are 9 years later and its getting worse, my primary care sent me to a neuro, she immediatly after her in the office tests and speaking to me said, sounds just like ms, let me order some mris for you, now here i am in tears because i just am so frustrated and want an answer, she said dont be upset or frustrated if your results from the mri come back negative it takes time....
i had mri of t spine c spine and brain with and without contrast
so i went in for my results today, she said everything was negative there is no issue...spent literally 2 seconds with me and left... i am beyond mad!! i just dont know what to do anymore... episodes seem more frequent then when they started 10 years ago...and they are coupled with more and more symptoms
lol i know something is wrong, but i feel like i am going crazy because these drs dont listen to me and make me feel like its in my head
I am sorry you are going thru this but it sounded like she just told you everything thing is negative and just left you with that. Not sure I am right about this, i had a hard time reading all your words.
You would think she would suggest another plan or something. You didnt say, but if you can find an MS specialist you would be better off. There is obviously something wrong with you.
Hang in there, hang in here..keep us posted.
hugs, meg
You would think she would suggest another plan or something. You didnt say, but if you can find an MS specialist you would be better off. There is obviously something wrong with you.
Hang in there, hang in here..keep us posted.
hugs, meg
Have you seen the opthamologist? So sorry you're being given the run around!
Hugs,
Saide
Hugs,
Saide
oh i forgot to add the best thing was this past month i lost vision in my right eye, and when i moved my eye it hurt, it has returned to normal now, but i cant believe they can just brush this off, like this isnt normla...
they called be about some blood tests and say my b12 is not where they want it to be and want me to take b12 shots for 4 weeks, fine i will take your shots, and i understand some symptoms can be from lacking b12.. but come on now i am not dr but i am not stupid.. but fine i am beyond frustrated i will do this, and when this doesnt work then i need answers.. !
they called be about some blood tests and say my b12 is not where they want it to be and want me to take b12 shots for 4 weeks, fine i will take your shots, and i understand some symptoms can be from lacking b12.. but come on now i am not dr but i am not stupid.. but fine i am beyond frustrated i will do this, and when this doesnt work then i need answers.. !
You need to get an explanation for your symptoms. Never mind that there are no lesions on your MRI. You have Neurologic Symptoms now you need a diagnosis. If it is not MS, that great, so what the H_ll is it?
That's what you have to get across to your Neuro.
Bob
That's what you have to get across to your Neuro.
Bob
I'm sorry that the doctor spent so little time with you today and left you angry and feeling maybe helpless?
When I read your post, I saw "now here i am in tears because i just am so frustrated and want an answer, she said dont be upset or frustrated if your results from the mri come back negative it takes time."
Today you found out the test results came back negative, but if I understand you correctly, your neuro told you this could be a possibility. It sounds like you've just started back on this trail and I would highly encourage you not to give up given the severity of your symptoms. Please come back here as often as you need to for advice and support.
Do you have a follow up appointment with this neuro? If so, you probably will want to go over the results of the neuro exam, your symptoms and what her plan of action is. Please make sure that you get copies of all test results as well as doctors transcripts; even when I write down a list of questions and take notes during my visits, I am often surprised by what is in the doctors report. Don't know if its the "stress" of the visit or perhaps the doctors recall might be off.
If something seems off in the doctors report, you can always request that it be checked. These reports are usually dictated and then a person types the doctors report. If the person preparing the report is not paying attention or does not have a lot of experience, the report can contain errors that should be corrected.
I truly wish that it had gone better for you today. Please know that there are so many people here on this forum that can help guide you through this maze and hold your hand when you need it.
Hugs,
Audrey
When I read your post, I saw "now here i am in tears because i just am so frustrated and want an answer, she said dont be upset or frustrated if your results from the mri come back negative it takes time."
Today you found out the test results came back negative, but if I understand you correctly, your neuro told you this could be a possibility. It sounds like you've just started back on this trail and I would highly encourage you not to give up given the severity of your symptoms. Please come back here as often as you need to for advice and support.
Do you have a follow up appointment with this neuro? If so, you probably will want to go over the results of the neuro exam, your symptoms and what her plan of action is. Please make sure that you get copies of all test results as well as doctors transcripts; even when I write down a list of questions and take notes during my visits, I am often surprised by what is in the doctors report. Don't know if its the "stress" of the visit or perhaps the doctors recall might be off.
If something seems off in the doctors report, you can always request that it be checked. These reports are usually dictated and then a person types the doctors report. If the person preparing the report is not paying attention or does not have a lot of experience, the report can contain errors that should be corrected.
I truly wish that it had gone better for you today. Please know that there are so many people here on this forum that can help guide you through this maze and hold your hand when you need it.
Hugs,
Audrey
How Can a Person with MS Have a Negative MRI
http://www.medhelp.org/health_pages/Multiple-Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36
http://www.medhelp.org/health_pages/Multiple-Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36
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