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So frustrated

Posted: Wed Nov 19, 2014 5:11 am
by Goingcrazy
I am a female in late 30's .. A little over a month ago my left leg went numb . I thought I had pinched nerve and went to spine dr . He ordered MRI lumbar and by time I came back next week my left arm had gone numb. He did some flick test to fingers and said I reacted to it and wanted MRI of cervical also . Now let me say I do have back issues have had scoliosis my whole life and found out with Mri's that I also have couple herniated discs . However when I went back to dr again by then left arm was ok but right arm from elbow to hand was numb, in pain and very weak had to hold my arm with other hand. My face had started going numb started with my nose and between lip and nose and my jaw . Dr said spine issues not causing all of these areas to Be numb, Told me to see neurologist. Decided to go to neurosurgeon thinking he could handle any back issues as well as any neurological ones . He was Insistent just need to do surgery to replace cervical disc said that is causing most of my problems.... I was not comfortable jumping into surgery as my symptoms now included numbness, weakness, hard to write somedays, seeing spots or words blurring when reading, nausea , started feeling extremely tired and dizzy and started falling to my left when I walk. Also having excruciating headaches . Went to urgent care as I felt so bad they ordered MRI of brain with and without contrast . Came back normal.. Gave me meds for vertigo which did not help one bit. I get so dizzy it wakes me from sleep and not sure if I am gonna pass out or throw up..Other Mri's of back have only been done without contrast . Some days my whole left side of face so numb I feel like I have had a stroke I feel like I look like an idiot talking cause half of so heavy . I am forgetful and just plan not myself... Let me also say I have a sister with ms so this all scares me to death . So I went to neurologist who said if I had no back issues would already believe it is ms but thinks probably have combination of migraines causing dizzyness balance issues and said my back probably causing extemity issues.. Put me on preventative migraine meds and meds for migraine flare and wants me to do physical therapy to prolong need for back surgery . Said we will redo Mri's of everything with contrast in a few months and do spinal tap at that time based in Mri's and start ms treatment if we find that.. I am scared as I believe in my heart this is MS.. I have had back issues whole life doesn't make sense to be that just one day I would start having all these issues .. And now I have to take these other meds and wait for 2-3 months before doing anymore to check if it MS.just worried and wishing I had a for sure diagnosis one way or the other .. Anyone else going through something similar ? Also forgot to mention I keep having episodes of horrible pain/pressure over heart . One night I was sure I may have a heart attack . It's not all the time though comes and goes but feels so intense when happening like heart being squeezed ..

Re: So frustrated

Posted: Wed Nov 19, 2014 9:01 am
by lyndacarol
Goingcrazy wrote:I am a female in late 30's .. A little over a month ago my left leg went numb . I thought I had pinched nerve and went to spine dr . He ordered MRI lumbar and by time I came back next week my left arm had gone numb. He did some flick test to fingers and said I reacted to it and wanted MRI of cervical also . Now let me say I do have back issues have had scoliosis my whole life and found out with Mri's that I also have couple herniated discs . However when I went back to dr again by then left arm was ok but right arm from elbow to hand was numb, in pain and very weak had to hold my arm with other hand. My face had started going numb started with my nose and between lip and nose and my jaw . Dr said spine issues not causing all of these areas to Be numb, Told me to see neurologist. Decided to go to neurosurgeon thinking he could handle any back issues as well as any neurological ones . He was Insistent just need to do surgery to replace cervical disc said that is causing most of my problems.... I was not comfortable jumping into surgery as my symptoms now included numbness, weakness, hard to write somedays, seeing spots or words blurring when reading, nausea , started feeling extremely tired and dizzy and started falling to my left when I walk. Also having excruciating headaches . Went to urgent care as I felt so bad they ordered MRI of brain with and without contrast . Came back normal.. Gave me meds for vertigo which did not help one bit. I get so dizzy it wakes me from sleep and not sure if I am gonna pass out or throw up..Other Mri's of back have only been done without contrast . Some days my whole left side of face so numb I feel like I have had a stroke I feel like I look like an idiot talking cause half of so heavy . I am forgetful and just plan not myself... Let me also say I have a sister with ms so this all scares me to death . So I went to neurologist who said if I had no back issues would already believe it is ms but thinks probably have combination of migraines causing dizzyness balance issues and said my back probably causing extemity issues.. Put me on preventative migraine meds and meds for migraine flare and wants me to do physical therapy to prolong need for back surgery . Said we will redo Mri's of everything with contrast in a few months and do spinal tap at that time based in Mri's and start ms treatment if we find that.. I am scared as I believe in my heart this is MS.. I have had back issues whole life doesn't make sense to be that just one day I would start having all these issues .. And now I have to take these other meds and wait for 2-3 months before doing anymore to check if it MS.just worried and wishing I had a for sure diagnosis one way or the other .. Anyone else going through something similar ? Also forgot to mention I keep having episodes of horrible pain/pressure over heart . One night I was sure I may have a heart attack . It's not all the time though comes and goes but feels so intense when happening like heart being squeezed ..
Welcome to ThisIsMS, Goingcrazy. I assume that you have joined us here and posted details about your situation in an effort to invite our comments and opinions; with that assumption, I offer you mine:

I have read (and tend to believe): "doctors are experts in, and only test for, those parts of the body in which they specialize." So I am not surprised that the neurosurgeon is eager to do surgery.

Numbness/tingling in the legs and arms is the textbook definition of "peripheral neuropathy." This is a common symptom in MANY conditions (and is the most common symptom of a B12 deficiency). In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following:

http://peripheralneuropathycenter.uchic ... #bloodtest
Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B
Please note that the first blood test the U of Chicago suggests is for vitamin B12. In my opinion, this is where any one of your doctors should start your investigation of numbness, especially since all your symptoms (numbness, weakness, vision disturbances, extreme fatigue, dizziness, unsteady movements, migraines/headaches, forgetfulness, balance issues, chest pain) are consistent with a B12 deficiency. By the way, B12 deficiency runs in families – has your sister ever been screened for this possibility? And any person at any age can develop a B12 deficiency. If your GP or any other doctor orders testing to rule out any of the conditions listed above, please request your own copy of test results – it is important to have the actual numbers and memory often fails us. And do not take B supplements before testing as doing so will skew test results (and mask a possible deficiency).

There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B 12 deficiencies and patients went on to develop irreversible neurologic damage.

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Dr. Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/

MS is a diagnosis of exclusion, made after more likely possibilities have been ruled out.

Re: So frustrated

Posted: Wed Nov 19, 2014 10:28 am
by Goingcrazy
Thank you I will look into this as well . I am having a bad day and all symptoms acting up right now. When I start to get stressed everything starts to get worse or start up again .. Just want answers and to start feeling better. !!