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Re: Welcome to ThisIsMS

Postby lyndacarol » Tue Aug 04, 2015 7:23 am

kitty2015 wrote:Hello all :smile:

Not sure if this will be posted in the right spot but here goes

I'm new here but I'm in the middle of MS tests it seems.
MS quite honestly is my worst case scenario but its been over ten years of unexplained nerve issues,ten years of multiple hospital visits,appointments,doctors etc..well you all know the drill.

Long story short last mis diagnosis was lumbar spine issues/disc prolapse and sent to a neurosurgeon, of course neurosurgeon couldn't help and so asked me point blank if I'd ever had an LP to test for MS(pretty little box of hope went bye byes).
When I could get my stomach out of my mouth I then went and finally looked up the dreaded MS symptoms list and it was like marking off a winning bingo card!!!!(mind you MS had been suggested by many other doctors previously, I was just to chicken to research it). :oops:

Turns out my new Gp agrees and told me his friend has MS
So neurologist appt was last week and he's booked me in for 3 weeks time to have :
Brain and Spine MRI,Nerve conduction study(ouch) and an EVP(whatever that thing is lol)

Also had full array of blood tests last week after I phased out at my local shops and became incoherent cause I was too confused and fatigued to function(kinda felt and probably looked like a lost puppy with alzheimers)thankfully I was meeting a friend for coffee up there so someone was with me otherwise I hate to think,was scary. 8O

Have lots of diagnosis test questions among other questions so which part of the forum can I /should I post in please? :smile:
Welcome to this is MS, Kitty (kitty2015).

Among all the blood tests done, did you have the following? Do you have the actual number results of these tests?

From page 156 of What's Wrong with My Child? by Sally M. Pacholok, RN, BSN and Jeffrey J. Stuart, D.O.:

Costs (approximate) of commonly used blood tests for B12 deficiency:

Serum B12 [outdated test]… $50
HoloTc [newer, more reliable]… $118
Serum homocysteine… $147
Methylmalonic acid test (serum or urinary form)… $150


As for the appropriate subforum for posting… matching the topic of your question/post to the subject of the subforum will probably attract the most viewers with an interest in that subject. However, General Discussion probably works for all of us most of the time. It's your call, in my opinion.
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Re: Welcome to ThisIsMS

Postby kitty2015 » Tue Aug 04, 2015 4:38 pm

Hi

Unfortunately no blood test results yet but never had any that don't come back normal so not worried.

I do appreciate the question though.

Im 27 and in Australia by the way

The last thing I want is for this to be MS but it fits too well to be ruled out at this stage ,can reply with the symptoms list if that helps but it's not pretty and rather long so if you're curious happy to oblige.

P.s I have no idea how to reply directly to the person who asked about the blood test numbers so just wrote it here,sorry very new to this site
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Re: Welcome to ThisIsMS

Postby lyndacarol » Wed Aug 05, 2015 7:41 am

Hi Kitty,
When you discuss your blood test results with your doctor, ask for your own copy of the actual test result numbers. It is not enough to hear "normal" – you need the numbers – it is important to know where they fall in the standard range.

You will find many lists of signs/symptoms and red flags in the following video. Without knowing your specific symptoms, I would bet you find many of them here (it is not necessary to have ALL these symptoms in order to qualify for a B12 deficiency – it is one possibility to discuss with your doctor):

http://www.youtube.com/watch?v=BvEizypoyO0

Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12"

I highly recommend this 50-minute documentary featuring Sally Pacholok, RN, BSN & Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their new book, What's Wrong with My Child?); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

As for "how to reply directly to the person," I think the easiest way is to click on "PM" in the lower left corner of that person's post. That will bring up a page repeating the post which ends with [/quote] – you can place the cursor immediately after this and begin composing your message.

If someone sends you a private message (PM), there will be a number before "new messages" in the upper left corner of the ThisIsMS page; you can retrieve that message by clicking on "new messages."

We are basically a friendly group – if you have questions about anything, just ask. We don't always have the answers, but we try.
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Re: Welcome to ThisIsMS

Postby kitty2015 » Wed Aug 05, 2015 4:45 pm

Hi decided to put this up cause I'm quite sure someone else will ask this before long and next time I can just copy and paste lol. so here goes:

These are my personal symptoms,don't know correct terminology for most of them sorry

spasms and tremors (both hands,many Emergency visits cause if i over do things that spasms can last hours,but tremors are just everyday they dont leave it seems)
Right leg paralysed/numb (ankle weird as a result-since dec 2013)
Burning hands and feet after walking,standing still too long,hot sun or daily tasks,
Extreme fatigue/ridiculous fatigue levels
Encopresis(diagnosis:8 yrs old- severe constipation)
partial faints from heat any heat(blurred vision incoherent,dizzy etc-since yr 4 primary)
Choking on stuff constantly including my own saliva which is embarrassing
Entire right arm numbness(resolved a lot just weakness now)
Loss of function and strength in general,problems gripping,walking etc
memory issues/mind blanks(really frequent now over the last year and a half)
Urinary issues(laughing or coughing means leakage basically time to change knickers also embarrassing)
Odd flickering feeling/pain in my left eye particuarly with heat
Balance is awful(mostly due to r leg being so numb I think)

I think that's it. Most of these have gotten worse over the last 7 yrs but some I had as a child were never investigated cause our family didn't believe in illness or doctors.
I know i'm awfully young to have all these things going on but like I said nothing was ever looked into cause I had trouble convincing my family that something was badly wrong up till 2-3 yrs ago,let alone friends or doctors.

Welcome to my life
Kitty
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Re: Welcome to ThisIsMS

Postby cwphelan15 » Sat Aug 08, 2015 8:10 am

Hello All,

I have just joined ThisIsMS and wanted to introduce myself and share my story. I have been diagnosed with Relapsing Remitting MS since the fall of 2006. I had my first experience with MS symptoms in December of 2005 a few months after I had my son. I was numb from my feet to my C-5 spinal disk( not sure of proper terminology). At the beginning I struggled a lot between trying different medicines, experiencing symptoms, and just being 21 years old and finding out you have MS.

Now, 10+ years later I have made many changes in my life to help me with MS symptoms. Last summer I left a corporate job that was causing me a lot of stress and I was increasing my symptoms. I took several months off and truly focused on my health. I changed my diet and embraced practicing yoga and meditation.

I no longer eat dairy or gluten and focus on eating mostly fresh fruits and vegetables, as well as fish and lean protein. I limit the amount of processed and sugar filled foods and this has helped with my physical and mental health. Yoga has been a tremendous help as well! I enjoy taking classes or just practicing yoga at home.

That is a bit about me. If you have questions please feel free to reach out!

:peace: ,

Candy
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Re: Welcome to ThisIsMS

Postby lyndacarol » Sat Aug 08, 2015 11:34 am

cwphelan15 wrote:I have just joined ThisIsMS and wanted to introduce myself and share my story. I have been diagnosed with Relapsing Remitting MS since the fall of 2006. I had my first experience with MS symptoms in December of 2005 a few months after I had my son. I was numb from my feet to my C-5 spinal disk( not sure of proper terminology). At the beginning I struggled a lot between trying different medicines, experiencing symptoms, and just being 21 years old and finding out you have MS.

Now, 10+ years later I have made many changes in my life to help me with MS symptoms. Last summer I left a corporate job that was causing me a lot of stress and I was increasing my symptoms. I took several months off and truly focused on my health. I changed my diet and embraced practicing yoga and meditation.

I no longer eat dairy or gluten and focus on eating mostly fresh fruits and vegetables, as well as fish and lean protein. I limit the amount of processed and sugar filled foods and this has helped with my physical and mental health. Yoga has been a tremendous help as well! I enjoy taking classes or just practicing yoga at home.

That is a bit about me. If you have questions please feel free to reach out!
Welcome to ThisIsMS, Candy.

When you were diagnosed with RRMS in the fall of 2006, do you recall the symptoms (in addition to the numbness) that led you to the doctors? Do you remember the testing that led to your diagnosis of MS? (Numbness in the hands/feet is called "peripheral neuropathy.") Were you screened for nutrient deficiencies? Do you have copies of the actual test results numbers?

You are wise to have made the changes in your diet; such changes seem to help many people. I think "no gluten" is especially important – were you ever tested for gluten sensitivity? Lately, I have been reading about all the chemicals in our foods. Have you ever considered an organic diet?

We are glad you found us.
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Re: Welcome to ThisIsMS

Postby cwphelan15 » Sun Aug 09, 2015 4:59 pm

Welcome to ThisIsMS, Candy.

When you were diagnosed with RRMS in the fall of 2006, do you recall the symptoms (in addition to the numbness) that led you to the doctors? Do you remember the testing that led to your diagnosis of MS? (Numbness in the hands/feet is called "peripheral neuropathy.") Were you screened for nutrient deficiencies? Do you have copies of the actual test results numbers?

You are wise to have made the changes in your diet; such changes seem to help many people. I think "no gluten" is especially important – were you ever tested for gluten sensitivity? Lately, I have been reading about all the chemicals in our foods. Have you ever considered an organic diet?

We are glad you found us.


Hello,

The first symptoms I had were in December of 2005 2 months after I had my son. I had pins and needles/numbness to my C-5. I am not sure I included that in my previous post. In the fall of 2006 I had experienced numbness in my finger and hands. I was also experiencing muscles spasms in my mid section.

The testing I had done in 2005 were a spinal tap (worst thing ever), blood tests, MRI...I can't remember the rest and have copies of these documents somewhere.

As far as diet goes I have considered going organic and also going vegan. I have been reading a lot about Dr. McDougall and Dr. Swank. I am looking to do as much as possible to slow the progression and reduce symptoms. I was recently tested for a gluten sensitivity but I didn't have one. I do know that I don't feel very well if I eat gluten or dairy (especially dairy).

Thanks for welcoming me! If you have anymore questions please don't hesitate to ask.

:-D
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Re: Welcome to ThisIsMS

Postby lyndacarol » Mon Aug 10, 2015 7:41 am

cwphelan15 wrote:Thanks for welcoming me! If you have anymore questions please don't hesitate to ask.
You can retrieve the private message (PM) I sent you by clicking on "new messages" in the upper left corner of this page.
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Re: Welcome to ThisIsMS

Postby Sahsh1862 » Mon Nov 09, 2015 12:20 pm

Hello.
I am a recently diagnosed RR MS'er and currently on Tecfedera (1st full month).
I am dealing with daily weakness and dizziness. Feel like will pass out when standing too long. Anyone else same? What to do? I never thought I would pray just to shower! So far so good otherwise. I would say though..don't drink alcohol..too dehydrating! And I loved my martini's for sure. drats! Peace and Godspeed to you all.
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Re: Welcome to ThisIsMS

Postby euphoniaa » Mon Nov 09, 2015 3:00 pm

Sahsh1862 wrote:Hello.
I am a recently diagnosed RR MS'er and currently on Tecfedera (1st full month).
I am dealing with daily weakness and dizziness. Feel like will pass out when standing too long. Anyone else same? What to do? I never thought I would pray just to shower! So far so good otherwise. I would say though..don't drink alcohol..too dehydrating! And I loved my martini's for sure. drats! Peace and Godspeed to you all.
Sandi

Hi Sandi, and welcome! I'm sorry to hear you're having such problems with Tecfidera! Since you're so new, you may not have done much exploring on the site yet. There are individual forms for each of the mainstream MS treatments, and here's a link for the one where people share their Tecfidera experiences: tecfidera-bg-12-dimethyl-fumarate-f52/

There's plenty of info here and people to answer questions, so start exploring and ask away. Good luck! :smile:
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Welcome to ThisIsMS

Postby NoraMiller » Thu Jan 14, 2016 12:23 pm

Hi all. I'm 37, Albertan, technically pre-diagnosis, but recovering from an optic neuritis attack last June... and discovering 10 lesions on my brain in a December MRI. I learned through this process that Canada is the world capital of MS and Alberta is the leader of the pack in Canada - lucky us! (Matt Embry was actually a year or two ahead of me in the same high school - I remember his diagnosis.) I'm being referred to the local MS clinic now, and for a followup MRI in 6 months.

I have never had issues with balance, strength, or asymmetrical nerve weirdness. But I'm taking this all quite seriously (I have three little kids and a husband I love dearly) so I've already made dietary changes inspired by the Wahl Protocol, though I'm getting a lot of whiplash with the "fat is good, brains are made of fat" and "cut your goddamn fat" messages between Wahl and Swank. I'd already been off dairy for over 20 years and I've been off gluten before, so that's easy, but losing legumes and even figuring out whether I HAVE to lose legumes is still a struggle.

I registered after I saw people here talk about cholestyramine inhibiting B vitamin uptake - I've been on it to relieve a lifetime of digestive distress since 2011! So that was eye-opening, and I'm going to add a complex supplement to my routine and see if I can get away with half-packets with dinner instead of full ones. It'd be hard to go back to daily cramps and distress so I want to keep taking the cholestyramine.

Man that's a lot for an introductory post. I'm glad this place exists though, it looks very well 'traveled' and informative.
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Re: Welcome to ThisIsMS

Postby lyndacarol » Thu Jan 14, 2016 1:34 pm

NoraMiller wrote:Hi all. I'm 37, Albertan, technically pre-diagnosis, but recovering from an optic neuritis attack last June... and discovering 10 lesions on my brain in a December MRI. I learned through this process that Canada is the world capital of MS and Alberta is the leader of the pack in Canada - lucky us! (Matt Embry was actually a year or two ahead of me in the same high school - I remember his diagnosis.) I'm being referred to the local MS clinic now, and for a followup MRI in 6 months.

I have never had issues with balance, strength, or asymmetrical nerve weirdness. But I'm taking this all quite seriously (I have three little kids and a husband I love dearly) so I've already made dietary changes inspired by the Wahl Protocol, though I'm getting a lot of whiplash with the "fat is good, brains are made of fat" and "cut your goddamn fat" messages between Wahl and Swank. I'd already been off dairy for over 20 years and I've been off gluten before, so that's easy, but losing legumes and even figuring out whether I HAVE to lose legumes is still a struggle.

I registered after I saw people here talk about cholestyramine inhibiting B vitamin uptake - I've been on it to relieve a lifetime of digestive distress since 2011! So that was eye-opening, and I'm going to add a complex supplement to my routine and see if I can get away with half-packets with dinner instead of full ones. It'd be hard to go back to daily cramps and distress so I want to keep taking the cholestyramine.
Welcome to ThisIsMS, Nora (NoraMiller). We are glad that you found us.

I am currently reading a book on vitamin D3. In the author's opinion, 50 to 90% of the US population is deficient or insufficient in vitamin D. Being in Canada, you probably have even higher percentages there. A vitamin D3 deficiency can cause many problems, including neurological problems. I hope one of your doctors has ordered a serum vitamin D3 (a.k.a. 25-hydroxyD) test. (FYI, optic neuritis is not unique to MS. Lesions on the brain are not unique to MS either. In fact, ALL the symptoms attributed to MS can be found in many other conditions, which must be ruled out before the MS diagnosis can be made.)

Testing your vitamin B12 level is a good idea, too. Thorough, initial testing should include these 4 tests: 1) serum B12 test, 2) RBC folate test, 3) serum homocysteine test, and 4) methylmalonic acid test. Also, it is a good habit to request your own copy of any test results.

When you mention, "a complex supplement," I assume you mean a B Complex. Most B Complex supplements that I have seen contain "folic acid" and there are doctors/scientists who think that the synthetic folic acid is a poor substitute for methyl folate. I do not know if a person can find a B Complex that includes methylfolate.

It might be a good idea to request other nutrient testing, in addition to vitamin D and vitamin B12. Iron, magnesium, and zinc are often low in people with MS, who may benefit by supplementing. (By the way, all these nutrients are reduced or chelated by the chemical glyphosate, the main ingredient in the herbicide Roundup. When these nutrients are chelated, or bound up, they are no longer available for use in our bodies. Organic food might be a better choice; your digestive problems may be due in part to the glyphosate residue in the standard diet.
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Re: Welcome to ThisIsMS

Postby NoraMiller » Thu Jan 14, 2016 2:09 pm

Thank you for the warm welcome and all that information, Lynda! (or do you prefer lyndacarol?)

I used to have a bad indoor tanning habit, so my D levels were just middling, not dangerously low. My husband (who has zero symptoms of anything) almost had rickets! So we are definitely hitting that vitamin hard in our family these days. I'm taking 8K daily.

The supplement I'm hoping to pick up tomorrow for B is apparently good but I would love to share the label once I get it. I'm also taking K, Coenzyme Q10, Kelp, a powdery sea vegetable thing (that's a technical term), and fish oil. My FIL, with asymptomatic MS, swears by Evening Primrose Oil, so I was going to add that. And all this on top of the non-dairy, non-gluten, high-greens, no-saturated fat, low-sugar, avoid-other-grains initiative. I should look around for a good thread to Monday Morning Quarterback the supplement lineup, because if there's a way to figure out which ones are useless, that would save our pocketbook some!

lyndacarol wrote: (FYI, optic neuritis is not unique to MS. Lesions on the brain are not unique to MS either. In fact, ALL the symptoms attributed to MS can be found in many other conditions, which must be ruled out before the MS diagnosis can be made.)


I am grateful to hear this; it's gracious of people who live with a disease to have no ego about saying, "don't rush into our club." Honestly I have tried not to google it too hard, as you can imagine, but seeing stats like 80-90% of people with my history go on to be diagnosed was what made me want to be proactive.
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Re: Welcome to ThisIsMS

Postby ElliotB » Thu Jan 14, 2016 3:58 pm

Welcome to TIMS.

Since you mention "digestive distress", I strongly recommend you read a couple of books by Dr. David Perlmutter, Grain Brain, and Brain Maker. A diet completely void of gluten and rich in probiotics and fermented foods make be of tremendous benefit to you in more ways than you can imagine.

Hope you are feeling better soon!
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Re: Welcome to ThisIsMS

Postby lyndacarol » Thu Jan 14, 2016 5:46 pm

NoraMiller wrote:Thank you for the warm welcome and all that information, Lynda! (or do you prefer lyndacarol?)

I used to have a bad indoor tanning habit, so my D levels were just middling, not dangerously low. My husband (who has zero symptoms of anything) almost had rickets! So we are definitely hitting that vitamin hard in our family these days. I'm taking 8K daily.



lyndacarol wrote: (FYI, optic neuritis is not unique to MS. Lesions on the brain are not unique to MS either. In fact, ALL the symptoms attributed to MS can be found in many other conditions, which must be ruled out before the MS diagnosis can be made.)


I am grateful to hear this; it's gracious of people who live with a disease to have no ego about saying, "don't rush into our club." Honestly I have tried not to google it too hard, as you can imagine, but seeing stats like 80-90% of people with my history go on to be diagnosed was what made me want to be proactive.
When joining ThisIsMS, I tried to use my first name "Lynda," but this was already taken. Then, I tried "Linda," but again it was already taken. So I joined my first and middle names: lyndacarol. Anything works for me… I will even answer to "hey, you!"

I'm glad to hear you are taking vitamin D; my only suggestions would be to take plenty of magnesium and, also, to take vitamin K2 (menaquinone) with your D. Vitamin D needs and "uses up" magnesium in its functions; vitamin K2 will escort calcium to proper locations (bones and teeth) and possibly reduce the deposit of calcium into soft tissues.

Your supplement/diet regimen sounds reasonable to me. Our resident "guru" on nutrients is jimmylegs; she will be glad to answer any questions in that area, I know.

I grant you that the article, "Brain Lesions: What's the Magic Number?" to which you linked us sounds dire; but bear in mind that it was written in 2007 – almost 9 years ago. (There have been many opinions in the interim.) The fact that you "want to be proactive" is admirable – I have the feeling that you will handle this challenging time well. And you will be a great addition to ThisIsMS, if it does turn out to be MS.

Some people with MS symptoms never have lesions appear on MRI, and there have been autopsies on people without any MS symptoms ever in their lives that have discovered brains riddled with lesions. There is no way to predict the future, especially with the course of MS.
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