Has anyone had parietal lesions only?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Has anyone had parietal lesions only?

Postby Aepps78 » Wed Oct 10, 2018 4:41 am

I had a thunderclap headache. Before and after the headache I had some visual disturbances. My doc ordered a ct of head and then LP. Two attempts at LP and they were both dry and very painful. So they ordered a MRA/MRI w&w/o contrast of my brain and found about 20 punctate white matter hyperintensities in the frontoparietal lobe. Sent me to the Neuro they did the exam and ordered blood test, visual evoked response, nerve conduction, and a mri with contrast of my spine. Had lots of symptoms but my case is unusual as I've had a double bunionectomy that went wrong and could be causing many or all of my nerve related symptoms in my legs, feet and back. I have a follow up appointment in November. My questions are has anyone had thunderclap or ocular migraines as part of MS and did your Neuro make you wait till the follow up or call you with results? And has anyone had involvement of parietal lobe with no ventricular lesions? Im strongly convinced the absence of periventricular lesions is a good sign that this is not MS but concerned that my problem may be more vascular.

History of MS like symptoms including left leg numb for 3 days, pins and needles in legs, hip, back, arm, hand. Spasticity in back legs and hip on right side. Muscle spasm chest and neck. Recurring tightness in chest and neck. Double and blurry vision on and off my eye doc says my eyes are fine. Weird detached feeling of my entire scalp. Pinpoint pain in feet, legs. Feeling of worms under my skin in legs sonetimes.
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Re: Has anyone had parietal lesions only?

Postby jimmylegs » Wed Oct 10, 2018 5:02 am

i had two migraines (one in my teens one in my 20s). since dx, a couple of episodes of scintillating scotoma. they clear up with supplemental magnesium.

in my case nothing during the dx process so though i remember it clearly, i'm never in that frantic, everything is urgent mode - i just wait and see.

i don't recall off the top where my cranial lesions are or aren't. just know my spinal ones are classic b12 deficiency pattern.

getting a dx made me pay a lot more attention to nutrition. first just b12. then the b complex, then essential vitamins and minerals and fatty acids in general. then cofactor interactions between them. all in context of proper hydration and exercise of course. finally after some years arriving at the mainstream public health recommendations - which had been there all along!

ever been referred to a preventive health pro? they can spot problems which we basically know but might need an outside voice to underline in red. good to act before things go so wrong they are finally picked up in diagnostic tests for illness!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Has anyone had parietal lesions only?

Postby Aepps78 » Wed Oct 10, 2018 6:17 am

I have not seen a preventative health pro. I didn't know to ask about that so I will at my next appointment.
They did report my blood work was back and I once again have very low vitamin d. I just finished taking 50,000 units a week for 6 months. Last dose was may and began it again this month. They said the other test were fine but ill have to ask for a copy because I don't know if b12 was one of the test they ran.
My greatest sense of urgency is if it turns out to be vascular. It if its MS I've had it a long time so the only difference would be naming it which would really be a relief to be able to call it a name.
As far as nutrition a year ago I had high blood pressure and was extremely over weight. I've cut out all alcohol, sugar, gluten and grains. Sort of keto but not as strict as some. I've lost 130 lbs and my blood pressure is down and I'm no longer on meds. I've seen a tremendous improvement in the stomach problems that I was having at the time. Lots of heart burn indigestion and throwing up daily have all resolved. I'm thankful for this. At first my fatigue seemed to lift almost like a magical wand had been waived and I had energy I hadn't felt in years. But when things are stressful the fatigue returns and the back pain starts up and the tingling and all. I forgot to mention I have a lot of problems with gait and balance. Those have not improved and maybe are slightly worse. I find its very hard to walk down hill as my balance is not right. Since July my back flare has not went away. I can't walk more than 20 or 30 minutes without excruciating pain in my right back down my leg to my knee. I'm hopeful the pain is related to the vitamin d defiency rather than something neurological.
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Re: Has anyone had parietal lesions only?

Postby jimmylegs » Wed Oct 10, 2018 6:36 am

hi again
re the d3 prescription. were there any accompanying directions to supplement with d3 cofactors? either up to may or since the start of this month?

very good idea to take a closer look at the b12 result if available

re vascular concerns, please note that high dosing d3 without appropriate cofactors could contribute to vascular issues. your mentions of tightness, spasm, spasticity, high blood pressure, overweight, and alcohol use put up several red flags in the d3 cofactor department. sugar is a great thing to limit severely, gluten can be managed but certainly should not be overdone, and diverse whole grains in proper proportion compared to whole veg, whole fruit and as a component of healthy protein intake, have clear value as supported by research evidence.

congrats re your weight loss! please be aware that depending on your size you could require more essential nutrients daily. recommended intakes for healthy average joe may not apply. case in point, recent evidence from my obese friend whose dose response to vit d3 exactly matched the dulled response in the literature. ie, the doses she took over 10 days should have boosted her levels 50 nmol/l but they only went up by 30 nmol/l. her docs had only told her to take 4000 IU per day; now she's taking 6000IU per day because we have the evidence that she needs more than status quo, and the lit says 6000 IU will get her there. at the same time her chemo drugs are draining important d3 cofactors, as we saw while she was in hospital recently and they were monitoring electrolytes. so she's taking more of that as well. evidence suggests it will help protect her kidneys from chemo damage. overall it's helped her manage the severe pain that's one of her delightful side effects. none of that is standard practice. it's just us using lit, her xp, and her tests (sometimes in comparison to mine) to try to figure out a useful way forward!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Has anyone had parietal lesions only?

Postby Aepps78 » Wed Oct 10, 2018 6:54 am

Thank you so much for this info. I had not heard anything on the subject of cofactors. I will mention this straight away to my dr. I'm not very good at understanding all that I read. Comprehension is not what it used to be. The reason for eliminating gluten is because I noticed a lot of bloating with gluten. I suspect celiac or some form of gluten intolerance but have not ask for a test to confirm. I do plan to ask for the test because I've read that it can make your body unable to absorb vitamin d. Is this all something that the preventative health pro can help me with or should I bring it up with my GP or Neuro?
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Re: Has anyone had parietal lesions only?

Postby jimmylegs » Wed Oct 10, 2018 7:28 am

doc likely not up to speed on the cofactor issue. the issue is finally starting to surface in research, but was a lifesaver for me a decade ago.
i used to react to gluten when deficient in zinc. which is guess what, another d3 cofactor. gluten digestion places a high zinc demand on the body.

merely growing wheat requires sufficient zinc in soil. when not enough is there, protein ratios (gladin, glutenin) in the final crop alter so that they are more likely to cause an inappropriate reaction from the human immune system.

i've been the victim of a series of unscientific 'healthy' elimination-style diets over the years. therefore, i'm highly skeptical of food faddism involving elimination, other than things like junky salty sugary processed pseudo foods ( and that's before we even get into drugs, alcohol, smoking, lethargy etc) - the no brainer type stuff.

skepticism includes blanket gluten elimination - vs limitation/moderation - without clear evidence of a diagnosed allergy. yes *excess* gluten can place a higher demand on nutrient status. (as can sugar, dairy, and alcohol consumption, and as can intense physical exercise and mental or emotional stress).

yes some of those essential nutrients are d3 cofactors. however, rather than avoiding every possible activity that can involve the use of a nutrient (it will be tough to avoid using your body after all) it's more about balance and ensuring enough of the right things go *in*. not so much taking gluten out, the then leaving your body to limp along with whatever scraps it's getting from the rest of an otherwise nutrient-poor diet.

re a preventative health pro - ask for referral from the GP i think. you're not looking for any old person handing out nutrition advice off the street (like me for example). you're looking for a highly qualified professional, such as a registered dietitian. (that said, i have had issues with the skill sets of dietitians, and of my naturopath (quack quack) and i've had to teach more than one GP how to do nutrient testing. my new one's still early in the learning curve, but at least she orders me the tests i ask for)!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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