This Is MS Multiple Sclerosis Knowledge & Support Community

Hello everyone.
I've been through a lot of testing and symptoms for a little while. In late 2012, I lost a lot of sensation in my right leg and parts of my right hand along with a lot of coordination issues. I had a positive Romberg test, and had some issues with reflexes as well. I had an MRI done that year (December 2012), along with an EEG a few months later. The MRI was an open MRI (I think it was wide-bore), but I'm not sure of the strenght. There was one small lesion on my right parietal lobe, and a mega cisterna magna (vs arachnoid cyst) on my posterior fossa (cerebellum). These were brought to my attention briefly, but then ignored altogether. I had a slightly abnormal sleep deprived EEG, and the neurologist jumped on a seizure diagnosis and started me on anti-convulsants. I started on lamictal, which I was allergic to (rash), then moved to Keppra (which did nothing for my symptoms), then I moved to zonegran (which made me excessively tired and "foggy"), and now I'm supposed to be trying Gabapentin when I can get to the pharmacy. I don't have an official primary care doctor, and I use my university's health services for my "doctor" visits. I requested a copy of my medical records, and the most recent visit shows that the physician assistant believes that my symptoms are psychiatric in nature because they are all over the place.

More recently, I have had tingling in my right leg, with a heaviness to it. I believe I may have experienced the "MS Hug" this year as well. During August of 2014, I thought I was having a heart attack...my rib cage and chest started to constrict with this prickly pin sensation, and it became harder to breath. I went to walk out of the room to get my fiance but I doubled over in pain and couldn't move for a good ten minutes. It felt like the life was being squeezed out of me and it was terrifying. Once he came into the room I begged him to drive me to the ER down a few blocks from where we live. I didn't end up going inside, but we sat in the emergency room parking lot "just in case" it was a heart attack. This happened another time when we were at home, but I didn't ask him to drive me to the ER that time. I have had issues with this symptom cropping up when I'm working at the cafeteria, but it hasn't been as intense as the other two times.

I've also been having vision problems. I have this weird symptom that happens (usually when I'm walking) where my vision starts to shake as though I were in an earthquake, but all my other senses are fully intact. It's really scary and disorienting. I've had a lot of pain in my left eye, and some abnormal blurring as well.

Fatigue was one of my main complaints over this past winter and into 2015, so when I brought this up to the neurologist she told me that it was probably seizure related and that I was reading too much online. She told me that if it would ease my mind she would order a sleep study to rule out a sleeping disorder, but the test wasn't very well covered by my insurance so I declined.

I'm feeling a bit lost here, and I don't really know what to do. I can't imagine that these symptoms are "made-up" because they are very real for me. I just went in today to the Neurologist, which is where the new medication came in (gabapentin), and I stressed the sensation of being crushed around my chest/ribs. She decided it might be a good idea to order a back MRI, but once again she tried to downplay the symptoms. Does anyone think this could be MS related? Or what I should do next?

Was the neurologist a MS specialist? A new MRI is a good idea. Make sure you have your spine done as well. Could it be MS? Yes, but understand there are hundreds of diseases that mimic the symptoms of MS. MS is generally difficult to diagnose and seeing a neurologist that specializes in MS is in your best interest.

ladyofsong wrote:I've been through a lot of testing and symptoms for a little while. In late 2012, I lost a lot of sensation in my right leg and parts of my right hand along with a lot of coordination issues. I had a positive Romberg test, and had some issues with reflexes as well. I had an MRI done that year (December 2012), along with an EEG a few months later. The MRI was an open MRI (I think it was wide-bore), but I'm not sure of the strenght. There was one small lesion on my right parietal lobe, and a mega cisterna magna (vs arachnoid cyst) on my posterior fossa (cerebellum). These were brought to my attention briefly, but then ignored altogether. I had a slightly abnormal sleep deprived EEG, and the neurologist jumped on a seizure diagnosis and started me on anti-convulsants. I started on lamictal, which I was allergic to (rash), then moved to Keppra (which did nothing for my symptoms), then I moved to zonegran (which made me excessively tired and "foggy"), and now I'm supposed to be trying Gabapentin when I can get to the pharmacy. I don't have an official primary care doctor, and I use my university's health services for my "doctor" visits. I requested a copy of my medical records, and the most recent visit shows that the physician assistant believes that my symptoms are psychiatric in nature because they are all over the place.

More recently, I have had tingling in my right leg, with a heaviness to it. I believe I may have experienced the "MS Hug" this year as well. During August of 2014, I thought I was having a heart attack...my rib cage and chest started to constrict with this prickly pin sensation, and it became harder to breath. I went to walk out of the room to get my fiance but I doubled over in pain and couldn't move for a good ten minutes. It felt like the life was being squeezed out of me and it was terrifying. Once he came into the room I begged him to drive me to the ER down a few blocks from where we live. I didn't end up going inside, but we sat in the emergency room parking lot "just in case" it was a heart attack. This happened another time when we were at home, but I didn't ask him to drive me to the ER that time. I have had issues with this symptom cropping up when I'm working at the cafeteria, but it hasn't been as intense as the other two times.

I've also been having vision problems. I have this weird symptom that happens (usually when I'm walking) where my vision starts to shake as though I were in an earthquake, but all my other senses are fully intact. It's really scary and disorienting. I've had a lot of pain in my left eye, and some abnormal blurring as well.

Fatigue was one of my main complaints over this past winter and into 2015, so when I brought this up to the neurologist she told me that it was probably seizure related and that I was reading too much online. She told me that if it would ease my mind she would order a sleep study to rule out a sleeping disorder, but the test wasn't very well covered by my insurance so I declined.

I'm feeling a bit lost here, and I don't really know what to do. I can't imagine that these symptoms are "made-up" because they are very real for me. I just went in today to the Neurologist, which is where the new medication came in (gabapentin), and I stressed the sensation of being crushed around my chest/ribs. She decided it might be a good idea to order a back MRI, but once again she tried to downplay the symptoms. Does anyone think this could be MS related? Or what I should do next?

Welcome to ThisIsMS, ladyofsong.

Every person at this website will have different suggestions. Here are mine:

Read through this website thoroughly, examining every tab, watching every video: http://b12awareness.org/

Then, I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.).

Then, with the list of your symptoms in-hand, go to your university's health service and request THOROUGH screening for a possible vitamin B12 deficiency, if this has not already been done. Usually, initial testing begins with #1 a serum B12 test (which is, in my opinion, fraught with unreliability); #2 a serum folate test; #3 serum homocysteine test; and #4 a methylmalonic acid test (either a serum test or a urinary test, which is less-expensive and which is considered more accurate).

These tests may uncover a B12 deficiency in the blood; but, even with good blood test results, it is still possible to have a B12 deficiency in the cells. Nevertheless, it is my opinion that this is the place to start looking. And please request your own copy of every test result.

Your symptoms are common to many conditions, including MS; but they are all consistent with a vitamin B12 deficiency, as well. Your symptoms are NOT "made-up" – these are not psychiatric in nature! Any person at any age can develop a B12.

Since you have stated, "I don't really know what to do" and have asked," what should I do next?" I have given you my suggestions. I wish you all the best. Please know that you have found a group of understanding friends here, who have our own unique ideas for you.

ElliotB wrote:Was the neurologist a MS specialist? A new MRI is a good idea. Make sure you have your spine done as well. Could it be MS? Yes, but understand there are hundreds of diseases that mimic the symptoms of MS. MS is generally difficult to diagnose and seeing a neurologist that specializes in MS is in your best interest.

She is a general neurologist with no specialty listed under her training. The only new MRI ordered was for the thoracic spine, though I'm not sure if I should get my head tested again. Trying to narrow down what could be the cause of all of my symptoms has been a very difficult task. I might try to look into a neurologist nearby that specialized in MS. Don't they mostly take patients who definitely have it though? In my previous MRI notes, multiple sclerosis was noted as a possible "incidental" finding because the lesion appeared to be from a demyelination.

lyndacarol wrote:
Every person at this website will have different suggestions. Here are mine:

Read through this website thoroughly, examining every tab, watching every video: http://b12awareness.org/

Then, I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.).

Then, with the list of your symptoms in-hand, go to your university's health service and request THOROUGH screening for a possible vitamin B12 deficiency, if this has not already been done. Usually, initial testing begins with #1 a serum B12 test (which is, in my opinion, fraught with unreliability); #2 a serum folate test; #3 serum homocysteine test; and #4 a methylmalonic acid test (either a serum test or a urinary test, which is less-expensive and which is considered more accurate).

These tests may uncover a B12 deficiency in the blood; but, even with good blood test results, it is still possible to have a B12 deficiency in the cells. Nevertheless, it is my opinion that this is the place to start looking. And please request your own copy of every test result.

Your symptoms are common to many conditions, including MS; but they are all consistent with a vitamin B12 deficiency, as well. Your symptoms are NOT "made-up" – these are not psychiatric in nature! Any person at any age can develop a B12.

Since you have stated, "I don't really know what to do" and have asked," which should I do next?" I have given you my suggestions. I wish you all the best. Please know that you have found a group of understanding friends here, who have our own unique ideas for you.

Thank you for the suggestions. I did have blood work done to test for a B12 deficiency, anemia, and my thyroid was also checked. Though you did state that it is possible that the findings may not be accurate. I am open to suggestions if it means finding an answer. I will read further into this tomorrow when I have more time.