Disappearing Lesions

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

Re: Disappearing Lesions

Postby jimmylegs » Thu Dec 07, 2017 6:41 pm

ah nice. iron as in a panel of iron tests, or serum ferritin?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Disappearing Lesions

Postby MnRdunck » Fri Dec 08, 2017 8:48 am

To help me accept this my family doc gave me a letter from my neuro to him. It is written in doctor code. Proper names of nerves muscles and what not plus a bunch of numbers indicating my scores in his little tests he does on me. About the only two things that I found that I really understand were his MS diagnosis and my Kurtzke score(I Googled it). Got a whopping 5.5 on that one. I looked it up so I now understand what it means and what it will mean once they get a cane under me.
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Re: Disappearing Lesions

Postby jimmylegs » Fri Dec 08, 2017 8:54 am

EDSS (kurtzke) 5.5 is no joke!

check out zyklon's tale
introductions-f20/topic28969.html

reports on progress since april (from outside intro thread)
general-discussion-f1/topic29542.html#p250490
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Disappearing Lesions

Postby MnRdunck » Fri Dec 08, 2017 10:20 am

I am actually trying to get into housing so I can live somewhere without steps. I live in a second floor apartment a two unit that is a rather large and tall Victorian house as many around here are. But I am finding it harder and harder to go up and down these stairs so I try not to. Went to the supermarket yesterday my son drove me (gave up the licence years ago pain meds) so as it is getting close to the holidays there was no good parking. After shopping I barely made it back to his car I was really looking for somewhere, anywhere that I could stop and rest in the parking lot. My balance is so so, but I will have days that it gets real bad tipping over bad. Almost fell on my niece on Thanksgiving, as every time I tried to stand that day off the couch I almost fell. Wow reading what I am typing I guess I did not think it was that bad until just now.

The paper my doctor gave me says "he can't even take one step without side stepping with tandem walking." I can see a 3 in pyramidial/brainstem axis. and a 4 for my sensory axis. Other than that 2's and 1's. Now this is concerning the neurologist had told me RRMS, but I see the word progressive a couple of times though not directly with the word MS. Yeah the 12th I start Betaseron, I already registered on the phone and internet. Yay me. Well I am going to go out on a limb here and say that once I have a cane I will move up to a 6.0 Yeah well this cheered me right up a little dose of reality in my little world where MS does not exist.
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Re: Disappearing Lesions

Postby MnRdunck » Fri Dec 08, 2017 10:35 am

And symptoms I look like I was trying real hard to impress someone with all the ones that I have that COULD BE from MS, or I just have that many random problems. This seems to be the MAYBE disease. MAYBE what is wwrong with you is from MS. And medications, MAYBE it will stop an attack this month and if not, MAYBE it won't be so bad.
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Re: Disappearing Lesions

Postby jimmylegs » Fri Dec 08, 2017 12:15 pm

let's hope that MAYBE a nutritional element to your treatment regimen helps!
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
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Re: Disappearing Lesions

Postby Zyklon » Fri Dec 08, 2017 7:02 pm

I remember my first days. I was unable to use stairs. Not a single step. It took some time to recover knee function. I pushed myself really hard and fought with stairs. I won!

Serum CRP and ferritin may be indicators for a relapse but you need to know your baselines. My CRP was 25 times more than my baseline and ferritin was at least 10 times over the range. A simple infection can increase your CRP and increased iron intake can increase your ferritin. So you can not trust these two results alone.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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Re: Disappearing Lesions

Postby MnRdunck » Mon Dec 11, 2017 9:53 am

So what blood work should I ask the Dr to do? I see him Thursday, I was going to have him do:
Vitamin D
Zinc
Magnesium
Iron
B12
The iron because of the red blood cells be off on my last CBD
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Re: Disappearing Lesions

Postby jimmylegs » Mon Dec 11, 2017 11:03 am

hi looks good, assuming these are specifically

1. serum cobalamin (ie serum B12), (for this one, you want to know your status specifically, in relation to a *min* target of 500 pg/ml or 370 pmol/L)
2. serum 25(OH)vitamin D3, (targeting min 40 ng/mL aka 100 nmol/L to start, then higher within reason, as long as all co-factors are carefully monitored)
3. serum ferritin???? and/or???? see questions below (if serum ferritin, targeting 80-100 ng/mL - i don't think i have worked on targets for any of the other iron panel tests)
4. serum magnesium, (as you know, i don't buy the 'that test is no good' bs especially for ms patients per all that research shared earlier) and your target with serum mag is 2.3-2.7 mg/dL)
5. serum zinc (aiming for 120 µg/dL or 18 µmol/L)

i have the same question re the iron testing. it doesn't make sense to me to just test serum iron.
it would make more sense if you were either
a. testing serum ferritin
b. running a more comprehensive panel of iron tests (plural)
https://labtestsonline.org/understandin ... /tab/test/
or c. both a + b.

all the targets shown for items 1-5 above are much more health-oriented than the overall reference or 'normal' range, which idiotically includes values for sick people. figuratively, the gumps and the einsteins each hanging out at their respective ends of the bell curve, but still under the same curve. for this reason it will be very wise to obtain your own copy of the specific results. speaking of which, did you have the actual result for hemoglobin? or just 'low'? the target for that one is at least 13.

hope that helps!
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
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Re: Disappearing Lesions

Postby MnRdunck » Tue Dec 12, 2017 12:59 am

Okay I am adding serum ferritin. The blood work is Saturday December 2nd, and Sunday December 3rd. I only included what was off. It changed a lot from one day to the next. My doctor said it just means something was happening. Hah so I was not faking it.

Saturday 12/02 Sunday 12/03

WBC Count 6.2 X 10*3/uL 4.5-11.0 Final WBC Count 15.9 X 10*3/uL H 4.5-11.0 Final
RBC Count 4.64 X 10*6/uL L 4.70-6.10 Final RBC Count 4.44 X 10*6/uL L 4.70-6.10 Final
Hemoglobin 14.0 g/dL 14.0-18.0 Final Hemoglobin 13.3 g/dL L 14.0-18.0 Final
Hematocrit 42.9 % 42.0-52.0 Final Hematocrit 40.6 % L 42.0-52.0 Final
Platelet Count 168 X 10*3/uL 150-450 Final Platelet Count 147 X 10*3/uL L 150-450 Final
MPV 9.9 fL H 6.5-9.5 Final MPV 10.1 fL H 6.5-9.5 Final
ABS Neutrophils 3.1 X 10*3/uL 1.5-8.0 Final ABS Neutrophils 12.2 X 10*3/uL H 1.5-8.0 Final

Of course there is more to the bloodwork but these stand out. I hope that it is what you were asking about. Also my intake of B12 is 500mcg. Do you know about what I should be taking? And yes I googled it I found some German guy talking about up to 3,000 but I could not find the FDA recommended amount other than it is necessary and what foods have it. :roll:
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Re: Disappearing Lesions

Postby jimmylegs » Tue Dec 12, 2017 4:27 am

ok so the hemoglobin is above the recommended min for ms patients; good.

make sure, once you have your test requisition, to take a good week or two break from all supplements before having the blood drawn.

b12 dri is low, around 2-3 ug/d

https://www.canada.ca/en/health-canada/ ... -2005.html

but that recommendation is only associated with keeping levels above about 200 in serum.
whether action might be needed will depend on your result. optimally you'll be getting what you need from healthy whole food sources. related link from a fave site:
http://www.whfoods.com/genpage.php?tnam ... #foodchart

i personally had eaten *not one* of the foods on that list for a good 15 yrs prior to dx. as for the single one that i would have eaten, i certainly wasn't emphasizing mushrooms and never consumed them in 1c. servings, never mind *daily* 1c servings!! in fact, 11 yrs post dx i think this may be the first i've heard that you can get b12 from mushrooms; will be looking for more detail on that.

what form of b12 is your daily 500mcg?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
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Posts: 10912
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Re: Disappearing Lesions

Postby MnRdunck » Tue Dec 12, 2017 5:22 am

Don't fall off your chair laughing you might hurt yourself. It was given to me so I did not buy it, it says Spring Valley but upon closer inspection in tiny print it says Wal-Mart 8O So pretty much not getting any. The bloodwork posted all jumbled from what took me 10 minutes to make look nice :confused: If you look closely it is two of the same test results per line that were taken one day apart. The numbers went crazy.
WBC Count 6.2 X 10*3/uL 4.5-11.0 Final (Day 1)
WBC Count 15.9 X 10*3/uL H 4.5-11.0 Final (Day 2)
It was during what I believe to be an attack. Now I know an attack does not show up on bloodwork my doctor thinks it is from the stress and pain of the attack. They are these incredibly painful events that last 4 to 5 days. They changed my pain scales. Yes plural one musculoskeletal pain and the other nerve pain. They are two completely different types of pain so you really can not compare the two.
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Re: Disappearing Lesions

Postby jimmylegs » Tue Dec 12, 2017 6:37 am

hehe don't worry not laughing about brand. the form question is about whether it's cyanocobalamin, hydroxocobalamin, methylcobalamin etc. but give the brands i think i have my answer. can you confirm from the label details on your product?

i will be extremely interested to see your upcoming nutritional bloodwork results, and whether they will be consistent with your other testing and symptoms.

if the doc is receptive, testing wish list could include serum copper (i don't care about ceruloplasmin) and serum selenium. an interesting 'nice to have' would be serum uric acid. none of these last three outrank any of the others discussed.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 10912
Joined: Sat Mar 11, 2006 3:00 pm

Re: Disappearing Lesions

Postby MnRdunck » Fri Dec 15, 2017 10:43 am

Got my blood work:

Iron 91 ug/dL 65-175 Final
Total Iron Binding Capacity 293 ug/dL 228-460 Final
Iron Saturation Percent 31.06 % saturation 15.00-50.00 Final
Transferrin 241.0 mg/dL 204.0-354.0 Final
Folate 12.8 ng/mL Final
Vitamin B12 516.0 pg/mL 200.0-944.0 Final
Ferritin 47.2 ng/mL 22.0-322.0 Final
Magnesium 2.2 mg/dL 1.5-2.4 Final

So I don't have a severe vitamin deficiency, no cancer, HIV, diabetes, etc..... So that leaves MS as the only possible reason for my horribly awful f**in painful I want to die nerve pain. Lyrica at max dose (200mg X3 a day) still left some residual pain so I am back on Gabapentin 1200mg 3X a day. My doctor won't up that to 1600mg 3X a day until the Betaseron has had a chance to fully kick in and he can see if it is working (7 weeks to get a full dose).
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Re: Disappearing Lesions

Postby jimmylegs » Fri Dec 15, 2017 12:14 pm

ah ha information!

b12 is borderline at 516 pg/ml. probably fluctuates above and below that optimal cut-off, but not too shabby.

i haven't looked at iron panel results in ages so can't comment at any finer grain than that provided by given reference ranges.

this healthy controls number is taken from one small study looking at health and disease in older folks so not terribly applicable but:
7.14 ± 4.04 ng/mL
so, 12.8 ng/ml looks solid at first whiff. weird that your lab provides no reference range on that one though.

ferritin i like to keep in the 80 ballpark personally. used to be super low all the time.

you local lab's reference range for magnesium looks as bad as anywhere else. if labs worked at a finer grain to describe an optimal serum range 2.3-2.7 mentioned previously, your level would have flagged low. 2.2 is around the level i had when experiencing shortness of breath and a bunch of other challenges (pain not a feature)

and what was serum d3 result iima? and serum zinc? are those results pending?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 10912
Joined: Sat Mar 11, 2006 3:00 pm

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