Help
Help
My symptoms started four years ago. It started with my left arm and left face going numb. I see my primary doctor and they did a MRI of my brain and cervical spine. MRI came back negative. Then I developed numbness in my whole left leg. Went to see my first neurologist. And what she ordered another MRI of my brain and entire spine. My MRI came back with no lesions. She said no lesions means no MS. And recently I started having stiffness and my legs and my arms cramping in my toes and my hands and shooting pain all throughout my body. Went to see my second neurologist. He said no MS by looking at my MRI. He ordered the EMG test which I will have the next week. I'm wondering if neuropathy is any way tied into MS? I have also had an on-time the way that my tongue was thick and struggling with speaking because of this. My ferritin level is five and I'm seeing a hematologist soon. My magnesium is 3.7 which is being replaced orally. Any guidance would be appreciated! I have had several other blood test they have not mentioned with her all normal.
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lyndacarol
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Re: Help
Like you, my first MRI was clear and the neurologist told me, "You definitely don't have MS." He was WRONG! (Or maybe he was right and my eventual MS diagnosis was wrong.) My second and third MRIs (ordered by neurologist #2 and neurologist #3) were also "normal." Your first neurologist is incorrect when she said that "no lesions means no MS." What she really meant was that no lesions means the doctors won't diagnose MS. Lesions appeared on my fourth MRI and my MS diagnosis was finally made. (By the way, my EMG test result also came back "normal.")salt93 wrote:My symptoms started four years ago. It started with my left arm and left face going numb. I see my primary doctor and they did a MRI of my brain and cervical spine. MRI came back negative. Then I developed numbness in my whole left leg. Went to see my first neurologist. And what she ordered another MRI of my brain and entire spine. My MRI came back with no lesions. She said no lesions means no MS. And recently I started having stiffness and my legs and my arms cramping in my toes and my hands and shooting pain all throughout my body. Went to see my second neurologist. He said no MS by looking at my MRI. He ordered the EMG test which I will have the next week. I'm wondering if neuropathy is any way tied into MS? I have also had an on-time the way that my tongue was thick and struggling with speaking because of this. My ferritin level is five and I'm seeing a hematologist soon. My magnesium is 3.7 which is being replaced orally. Any guidance would be appreciated! I have had several other blood test they have not mentioned with her all normal.
The possibility of B12 deficiency was never mentioned to me and never screened for. You have had a past serum B12 test, with the results of 448 pg/mL. (448 is not an optimal level.) Most doctors rely on this outdated "serum B12" but this test can be unreliable because #1 it measures total B12 in the bloodstream. If you are taking vitamin B supplements, they can mask a deficiency.
#2 Only the active B12 is able to reach and enter the cells and be used by our bodies. The serum HoloTc test measures this portion and is considered to be more reliable than the older serum B12 test at discovering a deficiency.
The HoloTc test has been around for decades (Norway has used it routinely since the mid-1990s), but it was classified as investigational in the US until recently. Even now, it is not available everywhere.
Since you will be seeing a hematologist soon, consider discussing B12 testing again now for updated levels.
If only the serum B12 test is available to you, discuss with the hematologist the two other additional tests (the urinary or serum methylmalonic acid test AND the serum homocysteine test) which can confirm a severe B12 deficiency (in this case the B12 will be low, while the MMA and Hcy will be elevated).
Re: Help
hi salt sorry to hear about your experiences so far :S
i am curious about the units for the ferritin and magnesium
also curious about the specific form and dose of the oral magnesium supplement.
what is your diet like? also curious about your daily routine re fluids, supplements, medications etc. wondering if you are likely to share the nutritional problems common to the average ms patient.
if so you may be able to deal with some of your symptoms
vit b12 problems have been on the radar as a differential dx for ms for decades. there are characteristic cervical and lumbar spinal lesions associated with its deficiency. i had done one proper clean b12 test in the past and my level had been undetectable. i had the characteristic lesions. i told the neuro about my b12 history but he said no, your level is 300 and i said that is because i am supplementing like crazy and they said stop taking the b12 and i said no, i am terrified of what else could go wrong and he said you have o-bands and brain lesions which are not seen in b12 deficiency but i later found the research that showed he had been incorrect.
all that said, b12 issues were the tip of the iceberg in my case and taking only b12 daily at the beginning did absolutely nothing for my symptoms (i had been able to reverse them by taking it over the previous couple years, but it no longer worked). it was only when i changed my diet radically and started taking a lot of different supplements that my health improved in leaps and bounds in a matter of days. since then it's been up and down as i have learned details over time. i had a particularly rough time with magnesium which is why i inquire about details there.
i am curious about the units for the ferritin and magnesium
also curious about the specific form and dose of the oral magnesium supplement.
what is your diet like? also curious about your daily routine re fluids, supplements, medications etc. wondering if you are likely to share the nutritional problems common to the average ms patient.
if so you may be able to deal with some of your symptoms
vit b12 problems have been on the radar as a differential dx for ms for decades. there are characteristic cervical and lumbar spinal lesions associated with its deficiency. i had done one proper clean b12 test in the past and my level had been undetectable. i had the characteristic lesions. i told the neuro about my b12 history but he said no, your level is 300 and i said that is because i am supplementing like crazy and they said stop taking the b12 and i said no, i am terrified of what else could go wrong and he said you have o-bands and brain lesions which are not seen in b12 deficiency but i later found the research that showed he had been incorrect.
all that said, b12 issues were the tip of the iceberg in my case and taking only b12 daily at the beginning did absolutely nothing for my symptoms (i had been able to reverse them by taking it over the previous couple years, but it no longer worked). it was only when i changed my diet radically and started taking a lot of different supplements that my health improved in leaps and bounds in a matter of days. since then it's been up and down as i have learned details over time. i had a particularly rough time with magnesium which is why i inquire about details there.
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Re: Help
Hi how are you? I have spoke to you in the past! I have to see a hematologist next month for an iron infusion. I have no clue why it is so low. My magnesium is 3.5 and my doctor has me taking magnesium Glisan eight 400 mg daily. I have just recently started that. I have irritable bowel so it's hard for me to take replacements because I get very sick. I have change my diet a lot. I have to watch what I eat because I have reactive hypoglycemia. For breakfast I have a half English muffin with cheese eggs and Canadian bacon. For lunch and very used today I had tunafish with broccoli and cheese. Dinner consists of salad with vegetables and some kind of meat. I also do turkey burger or fish with quinoa! Oh and I always add a vegetable. Then I snack throughout the day depending on my blood sugar is the almonds and cheese and vegetables. All I know is something is definitely going on with me. I've been to two neurologists and have gotten no answers except for no lesions no MS. Now I have pulsating waffles and I thicken tongue feeling. My tongue goes numb quite a bit. Also have sharp stabbing pain throughout my legs and arms. If I exercise it makes it worse. I don't know what my next step should be?