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Tingling, visual disturbances - MS? Ischemic Disease? Lupus? Lyme? - frustrated!
Several years ago I had a sudden loss of vision in my left visual field that lasted for almost a full week before resolving spontaneously. At the same time I felt rather "unbalanced" but chalked it up to the effect of missing half of my vision. I know I probably should have gotten checked out at the time, but didn't.
Soon afterward, I developed an overwhelming fatigue and tingling in my right foot. I scheduled an "exam" with my PCP. I place "exam" in quotes because the sum total of the visit was my PCP listening to my story, declaring that I was depressed & trying to shove antidepressants on me. He never laid a hand, stethoscope or reflex hammer on me the whole time. I was ticked that he was pigeon-holing me as depressed without doing any physical workup and insisted that he do SOMETHING. The only thing he did was basic bloodwork - CBC, glucose & because I have a first-cousin with Pernicious Anemia & Hashi's, a TSH & B-12 level. All was normal except for the B-12 being 250 when he said it should be more like 500-900. I was started on B-12 injections and the constant fatigue abated. The tingling never changed despite a recheck B-12 level of 953.
I felt like my PCP wasn't going to believe me or do anything so I decided that I could live with the low-level tingling and just went about my life. Problem is, I continued to have intermittent episodes of visual disturbance, dizziness and tingling that showed up in new areas.
I had a particularly frightening episode where I had to read & sign some paperwork but couldn't keep my vision focused on one spot - it just kept bouncing uncontrollably around the page...particularly side to side. I also noted that, in addition to the tingling in my feet, I had a tingling/burning/cold sensation (I know that sounds contradictory) on the backs of my hands (right worse than left) and a sensation that I had something like a shawl draped over my forearms. I was spooked enough by this that I contacted a new PCP who was concerned enough to order more labs & a cranial MRI. As before, a CBC, TSH & glucose came back normal. The vitamin D level was only mild low at 22. She called me personally after getting the results of my MRI & admitted that she'd never gotten a result that was so, in her opinion, "incredibly unhelpful" & really didn't know what to make of it. She was kind enough to supply me with a copy of the reading and it states:
"Some white matter disease. Small areas of bright T2 signal in the white matter of both hemispheres. Many are somewhat peripheral. No typical Dawson's fingers. Some questionable involvement of the corpus callosum. Such involvement would favor a process such as MS. Overall pattern isn't typical of MS and is nonspecific. This could represent demyelinization but also small vessel ischemic disease, Lyme, sarcoidosis or lupus. No generalized brain atrophy. Cerebellum & basal ganglia regions appear within normal limits."
I live in a rural area & was sent to one of the only neurologists in the area. His explanation for my issues was the small vessel ischemic disease & recommended taking an 81 mg Aspirin daily. I questioned the diagnosis/treatment because I didn't fit ANY of the risk factors for SVID - I was only 43, I don't have high blood pressure (mine runs 110's/70's), I'm not diabetic, I've never smoked & I don't drink alcohol. He became defensive that I was questioning him and stated "sometimes things just are the way they are" and breezed angrily from the room.
My PCP suggested a second opinion at a teaching facility nearly 2 hours from here. I took a disc of my MRI with me but the doc flipped through the images so quickly I'm not sure how he saw anything. He rather impatiently listened to my story, laughing out loud when I told him about the SVID diagnosis the local neuro had given me. He proclaimed that "the last thing you have is MS. In fact, the last thing you have is anything significant." When I asked what the "lesions" were on the MRI he told me that it was an "incidental finding and you're making it a bigger deal than it should be". I left his office feeling as though I'd been told that I was some whack-job hypochondriac. Despite still having intermittent symptoms, I haven't been to a physician since....even my PCP...for fear of being made to feel that way again. I did go get my eyes checked this Spring & was told I needed bifocals. Within 3 months those glasses weren't strong enough any longer, I've had to get stronger ones & it's VERY noticeable that the left eye is weaker/blurrier than the right one.
The beginning of last month, I had yet another episode where I had a sudden "hole" in my vision while driving. It lasted for nearly 2 days and was accompanied by horrible tingling in my right foot, the backs of my hands & forearms (especially the right one) & dizziness. As I moved around I felt like I was going to fall off to my right. I also had a lesser tingling in my left foot & new tingling in the right side of my face. My feet tingled/hurt so badly that I had trouble walking on them & my right foot/ankle/lower leg felt like it was weak & likely to "let me down" if I didn't place my foot carefully with each step. Also new this time was these sharp, sudden, electric shock-like sensations in all of the areas where the tingling was occurring.
I'm a 45 year old, white female. Never smoked, excellent cholesterol level (150), don't drink alcohol, my blood pressure remains excellent (116/68 in the midst of this episode), I've never had any surgery & I did a home A1C to be certain diabetes wasn't involved & it was 5.1...entirely normal. Until these symptoms started, I've always been in excellent health. I'm not sure if this has any bearing but my symptoms coincidentally started about 6 mo. after receiving the Hep B vaccination series for the second time. I got the series again in 2008 because I had a zero titer after having received the series when the vaccine first came out in the 90's.
What exactly can be concluded from my MRI result? Should I seek a repeat MRI, even if it means paying for it out of pocket? Is there some other testing that I should be asking for? I've not had a recent B-12 level been I'm certain it is fine as I've been faithful with the injections. I just want some answers as to what's going on. I'm no doctor, but one thing I know is that my symptoms are real, I'm NOT a hypochondriac & I'm NOT crazy!
Soon afterward, I developed an overwhelming fatigue and tingling in my right foot. I scheduled an "exam" with my PCP. I place "exam" in quotes because the sum total of the visit was my PCP listening to my story, declaring that I was depressed & trying to shove antidepressants on me. He never laid a hand, stethoscope or reflex hammer on me the whole time. I was ticked that he was pigeon-holing me as depressed without doing any physical workup and insisted that he do SOMETHING. The only thing he did was basic bloodwork - CBC, glucose & because I have a first-cousin with Pernicious Anemia & Hashi's, a TSH & B-12 level. All was normal except for the B-12 being 250 when he said it should be more like 500-900. I was started on B-12 injections and the constant fatigue abated. The tingling never changed despite a recheck B-12 level of 953.
I felt like my PCP wasn't going to believe me or do anything so I decided that I could live with the low-level tingling and just went about my life. Problem is, I continued to have intermittent episodes of visual disturbance, dizziness and tingling that showed up in new areas.
I had a particularly frightening episode where I had to read & sign some paperwork but couldn't keep my vision focused on one spot - it just kept bouncing uncontrollably around the page...particularly side to side. I also noted that, in addition to the tingling in my feet, I had a tingling/burning/cold sensation (I know that sounds contradictory) on the backs of my hands (right worse than left) and a sensation that I had something like a shawl draped over my forearms. I was spooked enough by this that I contacted a new PCP who was concerned enough to order more labs & a cranial MRI. As before, a CBC, TSH & glucose came back normal. The vitamin D level was only mild low at 22. She called me personally after getting the results of my MRI & admitted that she'd never gotten a result that was so, in her opinion, "incredibly unhelpful" & really didn't know what to make of it. She was kind enough to supply me with a copy of the reading and it states:
"Some white matter disease. Small areas of bright T2 signal in the white matter of both hemispheres. Many are somewhat peripheral. No typical Dawson's fingers. Some questionable involvement of the corpus callosum. Such involvement would favor a process such as MS. Overall pattern isn't typical of MS and is nonspecific. This could represent demyelinization but also small vessel ischemic disease, Lyme, sarcoidosis or lupus. No generalized brain atrophy. Cerebellum & basal ganglia regions appear within normal limits."
I live in a rural area & was sent to one of the only neurologists in the area. His explanation for my issues was the small vessel ischemic disease & recommended taking an 81 mg Aspirin daily. I questioned the diagnosis/treatment because I didn't fit ANY of the risk factors for SVID - I was only 43, I don't have high blood pressure (mine runs 110's/70's), I'm not diabetic, I've never smoked & I don't drink alcohol. He became defensive that I was questioning him and stated "sometimes things just are the way they are" and breezed angrily from the room.
My PCP suggested a second opinion at a teaching facility nearly 2 hours from here. I took a disc of my MRI with me but the doc flipped through the images so quickly I'm not sure how he saw anything. He rather impatiently listened to my story, laughing out loud when I told him about the SVID diagnosis the local neuro had given me. He proclaimed that "the last thing you have is MS. In fact, the last thing you have is anything significant." When I asked what the "lesions" were on the MRI he told me that it was an "incidental finding and you're making it a bigger deal than it should be". I left his office feeling as though I'd been told that I was some whack-job hypochondriac. Despite still having intermittent symptoms, I haven't been to a physician since....even my PCP...for fear of being made to feel that way again. I did go get my eyes checked this Spring & was told I needed bifocals. Within 3 months those glasses weren't strong enough any longer, I've had to get stronger ones & it's VERY noticeable that the left eye is weaker/blurrier than the right one.
The beginning of last month, I had yet another episode where I had a sudden "hole" in my vision while driving. It lasted for nearly 2 days and was accompanied by horrible tingling in my right foot, the backs of my hands & forearms (especially the right one) & dizziness. As I moved around I felt like I was going to fall off to my right. I also had a lesser tingling in my left foot & new tingling in the right side of my face. My feet tingled/hurt so badly that I had trouble walking on them & my right foot/ankle/lower leg felt like it was weak & likely to "let me down" if I didn't place my foot carefully with each step. Also new this time was these sharp, sudden, electric shock-like sensations in all of the areas where the tingling was occurring.
I'm a 45 year old, white female. Never smoked, excellent cholesterol level (150), don't drink alcohol, my blood pressure remains excellent (116/68 in the midst of this episode), I've never had any surgery & I did a home A1C to be certain diabetes wasn't involved & it was 5.1...entirely normal. Until these symptoms started, I've always been in excellent health. I'm not sure if this has any bearing but my symptoms coincidentally started about 6 mo. after receiving the Hep B vaccination series for the second time. I got the series again in 2008 because I had a zero titer after having received the series when the vaccine first came out in the 90's.
What exactly can be concluded from my MRI result? Should I seek a repeat MRI, even if it means paying for it out of pocket? Is there some other testing that I should be asking for? I've not had a recent B-12 level been I'm certain it is fine as I've been faithful with the injections. I just want some answers as to what's going on. I'm no doctor, but one thing I know is that my symptoms are real, I'm NOT a hypochondriac & I'm NOT crazy!
I can't say if the vaccine has anything to do with your symptoms or not but they are the patient reported conditions after a hep B vaccination.
Excerpt from B12 awareness:
"What are the Causes of B12 Deficiency?
Decreased stomach acid
Atrophic gastritis
Autoimmune pernicious anemia
Helicobacter pylori
Gastrectomy, intestinal resection
Gastric bypass surgery
Malabsorption syndromes
Crohn’s disease
Celiac disease (gluten enteropathy)
Chronic pancreatitis
Bacterial overgrowth (small bowel)
Fish tapeworm
Alcoholism
Malnutrition—Eating disorders
Vegetarianism
Advanced liver disease
Transcobalamin II deficiency
Inborn errors of B12 metabolism
Certain drugs
Nitrous oxide"
Your cholesterol is also very low and classed as hypocholesterolemia (total cholesterol levels below 160 mg/dL or 4.1 mmol/l). Cholesterol is essential to maintain the myelin sheath (protective coating around nerve cells). As much as 50% of myelin is cholesterol. The myelin also needs specific nutrients to function properly such as vitamin B1 (thiamine), vitamin B9 (folate), vitamin B12, omega-3 fat, iodine.
Causes of low cholesterol include statin drugs, hyperthyroidism, adrenal insufficiency, liver disease, malabsorption conditions (eg: celiac disease), malnutrition, manganese deficiency, acute infection, leukemia, inherited disorders of lipoprotein metabolism.
Excerpt from B12 awareness:
"What are the Causes of B12 Deficiency?
Decreased stomach acid
Atrophic gastritis
Autoimmune pernicious anemia
Helicobacter pylori
Gastrectomy, intestinal resection
Gastric bypass surgery
Malabsorption syndromes
Crohn’s disease
Celiac disease (gluten enteropathy)
Chronic pancreatitis
Bacterial overgrowth (small bowel)
Fish tapeworm
Alcoholism
Malnutrition—Eating disorders
Vegetarianism
Advanced liver disease
Transcobalamin II deficiency
Inborn errors of B12 metabolism
Certain drugs
Nitrous oxide"
Your cholesterol is also very low and classed as hypocholesterolemia (total cholesterol levels below 160 mg/dL or 4.1 mmol/l). Cholesterol is essential to maintain the myelin sheath (protective coating around nerve cells). As much as 50% of myelin is cholesterol. The myelin also needs specific nutrients to function properly such as vitamin B1 (thiamine), vitamin B9 (folate), vitamin B12, omega-3 fat, iodine.
Causes of low cholesterol include statin drugs, hyperthyroidism, adrenal insufficiency, liver disease, malabsorption conditions (eg: celiac disease), malnutrition, manganese deficiency, acute infection, leukemia, inherited disorders of lipoprotein metabolism.
You need some new doctors in your life!
I've had many years (14, to be exact) of undiagnosed symptoms (and I have the white spots in my brain, but mine could be attributable to migraine--I'm wondering about your vision loss--could it be an atypically long-lasting migraine? but that wouldn't account for most of your other symptoms) and I well know how it feels to be dismissed by doctors without an appropriate workup and discussion. You have my utmost sympathy.
Find another neuro. Or at least a good PCP who's on your side.
I've had many years (14, to be exact) of undiagnosed symptoms (and I have the white spots in my brain, but mine could be attributable to migraine--I'm wondering about your vision loss--could it be an atypically long-lasting migraine? but that wouldn't account for most of your other symptoms) and I well know how it feels to be dismissed by doctors without an appropriate workup and discussion. You have my utmost sympathy.
Find another neuro. Or at least a good PCP who's on your side.
My original PCP tested for the antibodies related to PA but said I was negative. That said, he had no explanation for why my B12 was low because I am most certainly NOT a vegetarian. I'm a flag-wavin', red-blooded American farm girl who eats a LOT of meat & eggs - the primary sources for B12.
I brought up the Hep B vaccination as a possible cause of my problems but was basically laughed at & told that there's been no studies showing definitive connection between Hep B vaccination & any problems such as MS, etc. I just find it very suspicious that everything fell apart a few months after the last injection of the 3-shot series. Why I didn't have an issue the first time around is beyond me. Was the formulation changed and that's why the second series caused a problem when the first didn't? Was it that my body "didn't like it the first time" but not enough to cause symptoms & that getting it a second time caused a bigger reaction? I've heard that's the way an allergy works - you have to be exposed once to sensitize the body & then the next time you're exposed, WHAM, symptoms of an allergy. All I know is that I'm not making this stuff up & I just want some answers! I worry that we're gonna screw around until some big deal symptom occurs and then it's going to be too late to reverse it...or worse yet, too late to even slow it down!
I brought up the Hep B vaccination as a possible cause of my problems but was basically laughed at & told that there's been no studies showing definitive connection between Hep B vaccination & any problems such as MS, etc. I just find it very suspicious that everything fell apart a few months after the last injection of the 3-shot series. Why I didn't have an issue the first time around is beyond me. Was the formulation changed and that's why the second series caused a problem when the first didn't? Was it that my body "didn't like it the first time" but not enough to cause symptoms & that getting it a second time caused a bigger reaction? I've heard that's the way an allergy works - you have to be exposed once to sensitize the body & then the next time you're exposed, WHAM, symptoms of an allergy. All I know is that I'm not making this stuff up & I just want some answers! I worry that we're gonna screw around until some big deal symptom occurs and then it's going to be too late to reverse it...or worse yet, too late to even slow it down!
I have Hashimoto's thyroiditis and autoimmune pernicious anaemia as well.
I use sublingual B12 and have done so for the past 5 years with great success.
The conditions reported after a Hep B shot include MS, guillain-barre syndrome, bell's palsy, type 1 diabetes, rheumatoid arthritis, lupus, idiopathic thrombocytopenia purpura, convulsions, encephalitis (brain swelling), brain demyelination, immune dysfunction, visual and hearing impairments (including optic neuritis), pancreatitis.
I use sublingual B12 and have done so for the past 5 years with great success.
The conditions reported after a Hep B shot include MS, guillain-barre syndrome, bell's palsy, type 1 diabetes, rheumatoid arthritis, lupus, idiopathic thrombocytopenia purpura, convulsions, encephalitis (brain swelling), brain demyelination, immune dysfunction, visual and hearing impairments (including optic neuritis), pancreatitis.
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