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Re: Hello

Postby Zyklon » Mon Jun 19, 2017 11:05 am

I am in Belgium now. I feel like I win the lottery today :)

Image

Yeaaa turbulence map. LTAC to west, Istanbul and transfer to Belgium. So far so good, knocking on wood. There you go detailed experience ;)

Before Travel

If you have heat intolerance double check weather before you go. My first 2 days in Belgium was not so fun because of high temperatures with an orange level heat alarm and no air conditioning.

Consider you need more time between transfers then before. I suggest a minimum 2 hours between flights. Becoming exhausted with running and stress? No thank you.

If you are a non-EU citizen and using DMD, you must declare it before your trip with proper documents. Even with my doctor report, I received a warning. I will share the document later. Vitamins and minerals are declaration-free.

Consider your holiday may extend with or without your will. Take everything double in quantity. I took 4 rebif injections and stupidly wasted one. 3 injections was enough but what if I stayed more?

Take some prednisol tablets as a precaution. Ask your neurologist before using.

Take some easy to carry snacks with you. During your travel, you may not have time to eat properly. My low blood sugar tolerance is worse then past.

Wear lots of layers. Airplanes can be very hot before flight and during flying becomes colder. Departure and arrival cities temperature difference can be great.

During Trip

Ask for using on-board airplane fridge for DMD. Most likely there will be an on-board ice-maker or container aswell for cold packs of your travel kit.

Drink plenty of water. You may forget to eat and not feel hungry because of adrenaline. Plan your meals.

Turbulence can be annoying and stressful. %99.999 your airplane will not crash because of it. Even I know that fact, it was uncomfortable. Trains are a much better choice if you can. If you sit in a place with annoying people, try to sit somewhere else.

Holiday

Most active week ever in my life. I managed to do 48 kilometers of walking in one week. My fat percentage is decreased by %3 to %19 in total. Surprisingly my weight is the same so I must have increased my muscle mass. Heavy luggages, carrying bags, child stroller...

Low blood sugar symptoms may mimic neurological symptoms. Leg weakness was the thing for me. I did not pay enough attention to my meals in the first days and had some difficulties. Once I gave priority to meals, problems solved. I drank plenty of brewed coffee everyday. I am sure caffeine helps me if stay below 3 cups a day.

I almost forgot my MS. I will try to do more holidays for sure.

Ferritin Update

Heart and liver MRI results are completely normal. No iron deposits and healthy. So my ferritin level is elevated most likely because of acute response of my body to first attack. I recommend every one to have a baseline ferritin level and check again after relapses. I will start phlebotomy treatment soon.

Regimen Update

So far so good. I feel even better with the addition of VM75. Curious about cholesterol, liver enzymes and ferritin level. 3 weeks for new tests. Ibuprofen is now 200 mg, 2 hours after rebif. I am gonna decrease paracetamol aswell.
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!
Zyklon
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Posts: 184
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

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Re: Hello

Postby Zyklon » Tue Jun 27, 2017 1:59 pm

I have some hair thinning. My hair falls easily. Gonna visit a dermatologist soon. Possible suspects: High ferritin, rebif
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!
Zyklon
Family Elder
 
Posts: 184
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Postby jimmylegs » Tue Jun 27, 2017 5:57 pm

interestingly low ferritin is associated with hair loss in women. if high ferritin is in fact implicated, i would tend to look at low zinc as a potential culprit. new study:
Diet and hair loss: effects of nutrient deficiency and supplement use
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5315033/
i have no idea what role rebif could be playing!
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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jimmylegs
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Re: Hello

Postby Zyklon » Sat Jul 01, 2017 6:15 am

Small updates:

Dermatologist said my hair was OK for my age and situation. He suggested increasing zinc, iron, cacao, taurine intake and special shampoo. I feel it is zinc related because after I have increased (3 times a week from 1) zinc intake, my hair is better.

Hematologist checked my results. All good except IgA borderline low and ferritin high. Since I don't have any iron accumulation in my heart and liver (MRI checked) and other iron related tests are good, he rules out hemochromatosis. So my high ferritin is not related with iron but acute response to relapse. He said he experienced similar acute responses with cancer patients. My high ferritin does not cause any damage, only needs monitoring. I will still do phlebotomies in long term. I am no more iron man :)

Today 37 degrees Celcius here. Nothing different. Next week I will try reducing paracetamol to 250 mg from 500 mg and 200 mg ibuprofen for Rebif. I guess my body can adapt not taking these so I will gradually decrease.

Weight training on the way. I look healthy but skinny. I know my benchmarks with weights. Lets see if I am better now or not.
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!
Zyklon
Family Elder
 
Posts: 184
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Postby jimmylegs » Sat Jul 01, 2017 11:13 am

glad to hear the zinc seems to be helping! although the research is still thin on the ground, if you will, at least the case study outlined in the study posted above is consistent with your experience, ie improvements to alopecia with oral zinc therapy and without outright zinc deficiency.

pleased to hear the dermatologist suggested zinc etc. last time i darkened a dermatologist's door i was told anything nutritional was 'too simplistic' and was given a stack of pharma prescriptions (never filled - my suspicious re zinc at the time were on point and improvements were huge)

glad to hear the high ferritin is not hemochromatosis!!!

great idea to wean off the painkillers if you can :) good luck with the weight training ahead!!
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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jimmylegs
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Posts: 10770
Joined: Sat Mar 11, 2006 3:00 pm

Re: Hello

Postby Zyklon » Sat Jul 08, 2017 2:05 am

So far so good with lowering pain killers. Next week I will try 125 mg paracetamol and 125 mg ibuprofen. I can do it, come on :)

No regimen update and it is all good. New tests next week. Take care.
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!
Zyklon
Family Elder
 
Posts: 184
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Postby jimmylegs » Sat Jul 08, 2017 4:17 am

very good! i rarely feel i need and never use painkillers any more. i figure they just mask a message my body is trying to send me. i use magnesium instead now. last time i had a headache, extra magnesium did the trick.

last time i needed real painkillers was in 2013 after knee reconstruction surgery. was panicking as the prescription ran out but they timed it right and i haven't needed anything of the sort since.

looking forward to next test results!
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
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Posts: 10770
Joined: Sat Mar 11, 2006 3:00 pm

Re: Hello

Postby Zyklon » Wed Jul 12, 2017 6:42 am

The ultimate test is completed for me. The gym, weight training. My trainer is a PhD student and experienced with "special" people. We started with some walking and stretching. Then very light weights. He focused on doing the moves right and using the brain. I was comfortable and he increased the weights. Plenty rests between exercises. My heart rate was 110-120 BPM. Some more walking and stretching at the end of 1 hour training. No pseudo exacerbation, no increase in symptoms. Actually I don't feel the numbness that I have in the morning now.

It feels soooooooo good. God damn good. Every week 3 days training and I will be fit.

Today I will try rebif with only 125 mg ibuprofen at the same time with injection. Come on, I know I can do it. Tests on friday.
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!
Zyklon
Family Elder
 
Posts: 184
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Postby jimmylegs » Wed Jul 12, 2017 4:02 pm

way to go!!! :D :D :D
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: 10770
Joined: Sat Mar 11, 2006 3:00 pm

Re: Hello

Postby Zyklon » Sat Jul 29, 2017 6:10 am

Updates updates :)

General

In last 3 days I have a mild upper respiratory tract infection or Rebif side-effect flu for the first time. No fever. No cough. Only sneezing.

Mild ataxia while walking outdoors when it is 35+ degrees Celcius or because of too much coffee/caffeine. Reducing it.

I had some bad nights with hypnic jerks. That falling feel is annoying. Not once but 4-5 times on some nights. It made insomnia. I used 7.5 mg Mirtazapin for a few days. Still dealing with sleeping and waking times. Better now.

50-75 mg ibuprofen with Rebif this week. Next week I will try Rebif without any other medicine.

Dealing with hair loss, typical male type. I have been trying minoxidil. For me it is a guaranteed way to have a headache. I know it works for majority but I don't want to have headaches. My deadline for minoxidil is 1 month.

GYM Update:

A fair warning: The things I do can be dangerous for your health so I strongly recommend everybody to consult doctors. I am not a health professional. What works for me can be your disaster. All my GYM training is with a personnel trainer who is specialized with special people (lots of success stories). He is a phd student with plenty academic background.

Before MS, almost 8 years ago, I was a "gym rat" for 3 months. Every week 3 days, weight training and cardio. It was good. Now I have started another episode for a very different goal: "Exercise for a healthy brain and a strong enough body to walk on my own in my future."

My "helloooooo" with MS was with an EDSS score of 6+. I have multiple lesions in my brain, neck, spine and I plan to share all my MRI results for educational purposes. On the paper I may be the VERY wrong one for gym and I know the risks.

Today I did my 6th GYM training and I easily matched my pre-MS weights and sets. I guess my body have done a good repair job with remyelination. I am sure that healthy diet and becoming optimal with minerals/vitamins helps me alot. Big thanks to jimmylegs.

Our priority is keeping my hearth rate and body core temperature low. I do lots of rests. I can comfortably talk all the time and avoid getting exhausted.

Something very funny, all my symptoms disappear in gym. Mild ataxia, numbness in feet fingers. Seratonin? Lactic acid? Any logical reason?

MS is degenerative. I know I will get worse in future. How much worse may be depends on how well am I. Lets say 10 points is the maximum score for my overall health. Before MS I give myself 4 points. I can not imagine a decline from there. Now it is 6 points. Target is 8-9 points. I want to have my neurological muscle weaknesses start from that point. A decline from 9 points and not from 6. Even 1 point increase at the end can be a saver. That is why I think gym is very important for me. Damage limitation in future. At the age of 60s, 70s, maaaaybe 80s.

Blood Update:

* means off the range
No result means still testing


D3: 69.17 ng/mL (2 months ago 57)
Calcium: 9.80 mg/dL (2 months ago 10.10, good progress. . Possible increased magnesium intake and/or K2 supplement result)
Magnesium: 1.98 mg/dL (2 months ago 2.25, going to increase mag supplement)

B12: 560 pg/mL (2 months ago 628, I will take 2 x 1000 mcg B12 a week)

Copper: Copper 114 µg/dL (2 months ago 90, VM75 works)
Zinc: Zinc 100 µg/dL (2 months ago 80, 3 times a week supplement + VM75 works)

Iron: 81 μg/dL (2 months ago 117, range 50-150, I guess it proves "Zinc should be taken together with iron" rule. I will start light dose iron)

Phosphor: 3.80 mg/dL (2 months ago 3.3. Possible VM75 result)

Potassium: 4.25 mg/dL (2 months ago 4.28)

Massive liver progress :D

*AST: 42 U/L (2 months ago: 79, range 10-40)
ALP: 48 U/L (2 months ago: 62, now in range 33-107)
*ALT: 76 U/L (2 months ago: 162, range 8-41)
GGT: 52 U/L (2 months ago: 96, now in range 8-61)
Bilirubin: 0.75 (2 months ago: 1.23, now in range 0.20-1.25)

*Ferritin: 1084 ng/mL (2 months ago: 1396, range 20-336)

Thyroid all good

TSH: 1.54 μIU/mL
Free T3: 4.90 pmol/L
Free T4: 16.80 pmol/L

*Total Cholesterol: 225 mg/dL (3 months ago 256, range 125-200, very good progress, gym and diet works)

Hemoglobin A1c: 32 mmol/mol (no blood sugar problems)

CRP: 1.54 μIU/mL (2 months ago 0.95, mild uri infection now)

Immunoglobulin A: 85 mg/dL (2 months ago: 82.5, good to see the increase)

Complete blood count all good
Lymphocyte: 1.52 K/μL (2 months ago: 2.1, range 1.3-3.5, mild infection)
Hemoglobin: 14.40 g/dL (2 months ago: 13.9, range 13.6-17.2, good increase)

Take care ;)
Last edited by Zyklon on Tue Aug 01, 2017 6:29 am, edited 2 times in total.
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!
Zyklon
Family Elder
 
Posts: 184
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Postby jimmylegs » Sat Jul 29, 2017 5:28 pm

awesome update! not sure you need to start an iron regimen just yet tho - not while ferritin is up over 1000 anyway.
will be very interested to see pending results come in.
congrats re liver and cholesterol progress! and don't you *love* kicking more butt at physical pursuits after your dx than before?! so awesome :D wtg.
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: 10770
Joined: Sat Mar 11, 2006 3:00 pm

Re: Hello

Postby Zyklon » Sun Jul 30, 2017 5:36 am

My last serum iron tests: 46 µg/dL on may 11, 7 days iron supplement resulted 123 µg/dL, now it is 81 μg/dL. Way too much decrease in 2 months. I will take 25 mg iron bisglycinate chelate on the days I take zinc. I wait for all the results.
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!
Zyklon
Family Elder
 
Posts: 184
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Postby jimmylegs » Sun Jul 30, 2017 8:03 am

interesting. it's been some time since i dug in on iron. refreshing memory:

low iron w normal/high ferritin in the table here: https://labtestsonline.org/understandin ... test/#what
(chronic illness not hemochromatosis)

this wouldn't have been published last time i looked into iron in-depth:

Interpreting raised serum ferritin levels
http://www.bmj.com/content/351/bmj.h3692
The bottom line
Elevated ferritin levels are usually due to causes such as acute or chronic inflammation, chronic alcohol consumption, liver disease, renal failure, metabolic syndrome, or malignancy rather than iron overload

also found this interesting oldie:

Hemoglobin, Packed Cell Volume, Serum Iron and Iron Binding Capacity of Selected Athletes During Training
https://www.karger.com/Article/Abstract/175330
It is suggested that shortage of iron in food cannot be responsible for the frequent occurrence of iron depletion, and that nonnutritional factors or nutritional factors other than iron, i.e. a fat rich diet, probably play a role in iron utilization of healthy people.

about kids, but still interesting also:

Increased serum copper and decreased serum zinc levels in children with iron deficiency anemia
https://link.springer.com/article/10.10 ... 27?LI=true
Serum copper levels were higher (189 ± 49 (Μg/dL) in children with IDA than those of controls (163 ± 37 Μg/dL) (p = 0.001). Serum zinc levels were lower in the patient group (109 ± 59 Μg/dL) than those of control subjects (135 ± 56 Μg/dL) (p = 0.017).

no particular point to make, just having a look at things :)
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: 10770
Joined: Sat Mar 11, 2006 3:00 pm

Re: Hello

Postby Zyklon » Mon Jul 31, 2017 8:47 am

Fun fun fun

Magnesium: 1.98 mg/dL (2 months ago 2.25)

I take 300 mg magnesium citrate daily with 3000 IU D3. Either my D3 level is increased quite alot because of more sunshine (holiday walking) or GYM aggressively consumes magnesium. Still waiting D3 result. So if you take D3 without any magnesium supplement, you are asking for serious trouble.

Copper 114 µg/dL (2 months ago 90, VM75 works)
Zinc 100 µg/dL (2 months ago 80, 3 times a week supplement + VM75 works)

Vitamin H (biotin), vitamin A and vitamin D3 test results on the way.

Today I will try Rebif full dose without any ibuprofen, nothing :)
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!
Zyklon
Family Elder
 
Posts: 184
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Postby jimmylegs » Mon Jul 31, 2017 11:48 am

wow multiple browser fail. how much time wasted now :P

anyhoo bummer re the mag level. remind me if you are taking your mag citrate in divided doses, half with the 3K IU d3 and half well away?

i'm wondering if you follow a routine, in terms of time of day for test, and what you do beforehand (including whether or not you are implementing a washout period each time). because you are able to test more often than many, in your case it may be worth making a particular effort to try to ensure your results are comparable from one test to the next.

yes stress (emotional or physical eg exercise or injury) depletes magnesium. lots of different interactions going on here overall.

copper zinc ratio still on the high side at 1.14. hopefully you can push it below 1.0.
having serum copper as is, w zinc at 120 would be right in the sweet spot (eg serum cu:zn between 0.7 and 1.0)

had you previously linked to product details for the vm75? if it contains both copper and zinc i'm interested in forms and amounts.

will be interested to see d3 numbers when they come in!

hopefully no issues with meds today :)

ps re iron. not that hemodialysis applies to you, but the dynamics discussed herein are interesting:

Combined high serum ferritin and low iron saturation in hemodialysis patients: the role of inflammation
http://cjasn.asnjournals.org/content/3/6/1691.short
"Serum ferritin, frequently used as a marker of iron status in individuals with chronic kidney disease, is also an inflammatory marker. The concurrent combination of high serum ferritin and low iron saturation ratio (ISAT) usually poses a diagnostic dilemma. We hypothesized that serum ferritin ≥500 ng/ml, especially in the seemingly paradoxical presence of ISAT level <25%, is more strongly associated with inflammation than with iron in maintenance hemodialysis (MHD) patients. ...

Conclusion: In MHD patients, ferritin values above 500 ng/ml, especially in paradoxical conjunction with low ISAT, are associated with inflammation. Strategies to dissociate inflammation from iron metabolism to mitigate the confounding impact of inflammation on iron and to improve iron treatment responsiveness may improve anemia management in chronic kidney disease."

i can't remember off the top if we've started on inflammation factor info at all. if not, you can review diet and look at daily patterns. a negative, pro-inflammatory score for the day programs for chronic illness. a postive, anti-inflammatory score like +50 is good for health maintenance. a high positive anti-inflammatory score such as +100 is good for therapeutic efforts when facing chronic disease. there's a whole IF website where you can enter common foods and check out their rating per serving.

pretty interesting stuff!!
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: 10770
Joined: Sat Mar 11, 2006 3:00 pm

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