Welcome to ThisIsMS

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Re: Welcome to ThisIsMS

Postby Anne11 » Fri Feb 19, 2016 5:37 pm

Hi, I am new to this site. As my Liver function readings are high at present my doctor is thinking of changing me from Gilenya to Tecfedera. Has anyone feedback on this drug. Thanks Anne
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Re: Welcome to ThisIsMS

Postby NHE » Fri Feb 19, 2016 11:53 pm

Anne11 wrote:Hi, I am new to this site. As my Liver function readings are high at present my doctor is thinking of changing me from Gilenya to Tecfedera. Has anyone feedback on this drug. Thanks Anne

Hi Anne,
Welcome to ThisIsMS. There are lots of posts in the Tecfidera forum discussing Biogen's new drug.

tecfidera-bg-12-dimethyl-fumarate-f52/
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Re: Welcome to ThisIsMS

Postby hmacoli » Fri May 13, 2016 4:07 pm

Hello Msers

I follow this great web page since 2009. I had some troubles with the registration. At last I achieve but I think it is my obligation, even late to make a more formal presentation in order among other things to share my experiences with my MS.

My first outbreak was in 2002. In 2007 I started with Gilenya. Even it slowed my desease and stopped the outbreaks in a high degree, it wasn't enough, and my body was every day more twisted and my dissability degree grew month by month. So in 2010 a light turned on in my mind after talking with a teacher who has cured himself from an autoimmune desease through diet. It was the shooting to a long way to healing in which I am still fully immersed , and my improvements have been notorious since them. I have developed my own strategy again MS that I have named as TRANQUILNESS which are the acronym of an non close list of therapies which I have tasted and integrated way (Nutrition,, Orthomolecular nutrition, Quiropractic, Posturology, Bionagnetic pair, among other). The web page by the moment is written in Spanish but for those who don't know this language I have put a translator in the main page (http://www.secretosdelaesclerosismultip ... pot.com.es).

In other post after this short introduction I am going to write a post with the last therapy that I have tasted that has been really amazing because its great results, simplicity and relative low cost, the Biomagnetic Pair. Perhaps the most amazing tberapy that I have tasted perhaps as I have expressed in my web page may be due to it has been the last one. I wish it would have been the first but I think that never is too late. The Biomagnetic pair "Between science and consciousness" is the title that I have given to the page talking about this therapy. Developed in 1988 by Dr Goiz and based in previous experiences of Dr Broeringmayer and Dr Goodheart, is a young and futuristic medicine of s XXI that can be enjoyed today.

My best regards

Hugo Macía
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Re: Welcome to ThisIsMS

Postby kitzzie » Sun Jul 17, 2016 4:27 am

Hi I'm Anna,
I was diagnosed with RRMS in March this year. 3 lesions on my brain and one spinal. Apparently I've had MS for the last 8-10 yrs. I started seeing DR's at a different medical centre and when I noticed my speech was slurring and I found it difficult to remember words my new DR suggested a CT scan followed by 3 MRI's The rest is history.... He he.
In one way I felt blessed that the lesions were caused by the MS and not cancer or strokes. I have an 11 yr old daughter (I'm 54) so hopefully I'll be around for her many more years.
The thing that makes me sad is that nothing can give us (me and her) back the last 8-10 yrs when I have been so depressed, in pain, angry and tired. My brave little girl have had to put up with this and it can't have been easy for her.
I've started on Gilenya about 1 and 1/2 mth ago. Initially I felt a lot better than I had in a long time. Starting to get some stomach problems and hair loss. Nothing I'm worried about but I had my first blood tests last week since starting medication and came up as positive for TB. 14 tubes of blood later I'm waiting for the results false positive???

Well, that was just me introduced.
Try stay positive all of you fellow MS:ers. Easier said that done I know but I love you all :wink:
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Re: Welcome to ThisIsMS

Postby RETROWOMAN » Tue Aug 23, 2016 9:48 am

HELLO EVERYONE , I already posted under MRI however just want to introduce myself.
I go by Retrowoman a name my grown son thought up I'm a Mother (7 kids) Grandmother(6 grandchildren although my grandson Silas @ 2 months old died of SIDS last year.

I got onto this site because my Primary Doctor told my husband & Me he thought I had Early MS due to my symtoms & MRI striking T2 Hypointensity maybe Iron/Mineral Disposition in Caudate/Putamen.
His letter to my Neuro states Iron Deposits in Basnal Ganglia.

I got an early appt for this Thursday with my Neurologist so hope she can give me some Solid Answers.
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Re: Welcome to ThisIsMS

Postby NHE » Tue Aug 23, 2016 7:14 pm

RETROWOMAN wrote:I got onto this site because my Primary Doctor told my husband & Me he thought I had Early MS due to my symtoms & MRI striking T2 Hypointensity maybe Iron/Mineral Disposition in Caudate/Putamen.
His letter to my Neuro states Iron Deposits in Basnal Ganglia.


I can't say if you have MS or not. However, you might be interested in looking over some of the work by Mark Haacke who has used SWI-MRI to demonstrate that MS patients have iron accumulations in the brain greater that what is present in controls.

http://www.ms-mri.com/index.php
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Re: Welcome to ThisIsMS

Postby DanielWyatt » Tue Oct 25, 2016 12:54 am

Hi thisisMS,

I hope that I could give and take important information on this forum. :)

Thanks!
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New to the forum need some advice re: my mom

Postby LynnsLegs » Tue Apr 04, 2017 8:46 pm

My mom has MS. she was diagnosed when I was 9. I am now 35. She is 60. It progressed pretty quickly. She's been bed ridden for 6 years or so. Her legs have atrophied to the point that they just look like skin and bone. It kills me. She was such a vibrant beautiful young woman. She enjoyed life and work and her family. But because of this disease she has lost so much. But through it all she has maintained a positive upbeat attitude. She is amazing and the strongest person I know. And now she told me today that her doctors think her kidneys might be failing. I don't know a thing about dialysis. So that's why I'm here. To educate myself on what my moms near future holds. Thanks for listening. J
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Re: Welcome to ThisIsMS

Postby jimmylegs » Fri Apr 07, 2017 12:21 pm

hi lynn i am afraid i know next to nothing about dialysis - and only a bit about support for kidney health, since much related info seems to be reactive in nature, after function has already been lost. there may be members on dialysis who can commiserate. in the meantime, welcome :) given that your mother has been bedridden for so long, i'm amazed you haven't already been pounced on re vitamin d3. here's hoping your mum's docs are on top of that line of inquiry in the research, eg https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2878736/ - not forgetting the rest of the essential nutrient spectrum, of course.
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: New to the forum need some advice re: my mom

Postby lyndacarol » Fri Apr 07, 2017 6:37 pm

LynnsLegs wrote:My mom has MS. she was diagnosed when I was 9. I am now 35. She is 60. It progressed pretty quickly. She's been bed ridden for 6 years or so. Her legs have atrophied to the point that they just look like skin and bone. It kills me. She was such a vibrant beautiful young woman. She enjoyed life and work and her family. But because of this disease she has lost so much. But through it all she has maintained a positive upbeat attitude. She is amazing and the strongest person I know. And now she told me today that her doctors think her kidneys might be failing. I don't know a thing about dialysis. So that's why I'm here. To educate myself on what my moms near future holds. Thanks for listening. J
Welcome to ThisIsMS, LynnsLegs.

I have no knowledge of kidney disease/failure. But in the book, The Magnesium Miracle, by Carolyn Dean, MD, ND, the author writes (on page 240) "Contraindications to magnesium therapy… With kidney failure there is an inability to clear magnesium from the kidneys."

Elsewhere she states, "To add insult to injury, anyone with any level of kidney disease is told to avoid magnesium! That's because patients with NO kidney function, who are on dialysis, can build up high levels of magnesium if they are given IV magnesium. These cases lead to detrimental advice that you should avoid magnesium if you have ANY level kidney disease."

Yet again elsewhere she has written, "However, when the kidneys are impaired, doctors tell their patients not to take magnesium, which is what they actually need to heal their kidneys. Dr. Dean has written articles and blogs about the need for magnesium in kidney disease and is in the process of updating those texts with the new information she has written for the 2017 revision of The Magnesium Miracle which is to be released in August of this year [2017]."


To me, her advice is contradictory; but there seems to be a connection between magnesium and kidney failure. Magnesium might be a logical topic of discussion with your mom's doctors. Have they given a reason for possible kidney failure? Has her magnesium level been tested? Her calcium level? (I believe the serum calcium level can be found in the Basic Metabolic Panel.)
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Re: Welcome to ThisIsMS

Postby Lisette » Tue Apr 18, 2017 6:30 am

Hello, I'm Lisette, I am new to this site. I have MS, diagnosed 2013, but guessing I've had much longer. I had Trigeminal Neuralgia in 2006, and has two Microvascular Decompressions in 2007 and 2008. So, as time is going on this disease is scaring the crap out of me. I thought maybe conferring with fellow people who also experience MS may be calming. I have a wonderful husband, who supports me in any way, but I find it hard to fully explain what I'm going through. Also, as time goes by I have started to feel like a whiner, not that my complaints aren't legitimate, but really who wants to hear it. Growing up I had a Mother who was sick constantly, for one reason or another, and I vowed never to be like that. Karma! I get MS, it kills me to complain! I guess what I am looking for is someone to tell me they feel similar symptoms, or recognize how one day you realize this disease has slowly changed you, when you weren't looking, or someone to just say- suck it up butternut! I also joined this site to get input on medications. I am currently waiting to try Ocrevus, I've been on Plegridy,Aubagio,Copaxone,Gilenya and Tecfidara, none worked so far. Are these drugs worth it? I appreciate any input.
Sincerely, Lisette
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Re: Welcome to ThisIsMS

Postby lyndacarol » Tue Apr 18, 2017 7:31 am

Lisette wrote:Hello, I'm Lisette, I am new to this site. I have MS, diagnosed 2013, but guessing I've had much longer. I had Trigeminal Neuralgia in 2006, and has two Microvascular Decompressions in 2007 and 2008. So, as time is going on this disease is scaring the crap out of me. I thought maybe conferring with fellow people who also experience MS may be calming. I have a wonderful husband, who supports me in any way, but I find it hard to fully explain what I'm going through. Also, as time goes by I have started to feel like a whiner, not that my complaints aren't legitimate, but really who wants to hear it. Growing up I had a Mother who was sick constantly, for one reason or another, and I vowed never to be like that. Karma! I get MS, it kills me to complain! I guess what I am looking for is someone to tell me they feel similar symptoms, or recognize how one day you realize this disease has slowly changed you, when you weren't looking, or someone to just say- suck it up butternut! I also joined this site to get input on medications. I am currently waiting to try Ocrevus, I've been on Plegridy,Aubagio,Copaxone,Gilenya and Tecfidara, none worked so far. Are these drugs worth it? I appreciate any input.
Welcome to ThisIsMS, Lisette. You have found a new circle of friends who understand your feelings.

Since you are in Pennsylvania, you may find the following article interesting:

Surprising prevalence of unrecognized vitamin D deficiency in neuro-muscular clinics in Central Pennsylvania
by Sankar Bandyopadhyay
https://www.ncbi.nlm.nih.gov/pubmed/25996965

“Previous work has shown vitamin D deficiency to be quite common in other neurological disorders such as multiple sclerosis, myasthenia gravis, and Parkinson’s disease. This study suggests this concern may be more prevalent in other neuromuscular conditions as well,” says AANEM News Science Editorial Board member Ileana Howard, MD, in a release.
Drs. Bandyopadhyay and Dejesus note that despite reports — albeit scattered — of vitamin D deficiency in various conditions of fatigue and pain such as Crohn’s disease, fibromyalgia, Parkinson’s disease, pregnant women, and myasthenia gravis, a search for vitamin-D deficiency is still not a routine or standard clinical practice, and while effective treatment exists, it is often missed.

If you have not had the vitamin D blood test called "25-hydroxy D," please call your GP and request it. Also, request your own copy of the test results so that you have the actual numbers – this could be very enlightening. Vitamin D deficiency can result in ANY kind of symptoms.

The California-based group, GrassrootsHealth (http://www.GrassrootsHealth.net), recommends that the vitamin D level should be at least 40-60 ng/mL.
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Re: Welcome to ThisIsMS

Postby FHaase » Tue Feb 13, 2018 12:23 pm

Hello my name is Fran and I have been diagnosed with RRMS. My doctor is starting me on Gilenya as soon as I get my eye exam. I have so many questions about MS and I am glad I happened to clicked on THIS link finally maybe I can get some answers. Thanks
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Re: Welcome to ThisIsMS

Postby Ttone35 » Thu Sep 13, 2018 7:27 am

Hello everyone. I see the last post in this forum/topic was about 8 months ago. I hope everyone is doing well. Like most people posting here, I'm new to this site and have just recently been diagnosed with RRMS. I am a 39 year old, Female from Ontario Canada.

7 years ago I moved away from my home town/friends/family/family doctor due to a bad breakup. In May 2018 the left side of my face went numb. I went to the walk-in clinic to make sure it wasn't a stroke. The doctor thought it might be a pinched nerve and told me if it didn't go away in a few weeks to come back in. It didn't go away so I went back in and they sent me for an MRI.

After the MRI, I went back in to the clinic and the doctor told me I had MS but couldn't properly diagnose me so he sent me to a Neurologist. My first appointment I didn't have the MRI disk - had no clue I need one - so the doctor sent me for blood work and made a 2nd apt.

I went back in for my 2nd appointment and was told that I was lucky in a sense, that it was definitive that I have RRMS and that the doctor didn't need any further testing to diagnose me so we can begin treatment immediately. The doctor and MS nurse then went through the list of treatment options and told me to pick one. Um ok. So I decided to go with Tecfidera. After I chose that, my neurologist was pleased with my decision and told me that was exactly what she recommended I take.

I am still waiting get that set up but it's in the works as I type so most likely will be starting the meds in the next week or so. Although the neurologist said she didn't need any further testing to diagnose me, I have an Evoked Potential test scheduled in October and another MRI for the spine in November.

Before my face going numb, I believed I was generally healthy. Yes I am overweight and have depression and anxiety (which I am not taking medication for - used to take anti-depressants 7-8 years ago but stopped taking them as I have been able to function alright without them). I don't get vaccinated and I don't like to take pills for no reason. Even if I have a headache, I will drink water and usually it goes away. In severe cases I will take a Tylenol.

Since my diagnoses, I have been struggling more with the reality of my situation/diagnoses/life in general/and the thoughts of having to take medication that may or may not work for the rest of my life.

I've made an appointment to see my family doctor after having them de-roster me from their practice (because I haven't seen them since I left town), I have convinced them to see me until I can find a family doctor in my area. There basically are no doctors in my area and the waiting lists are about 1.5 years out from getting one. I know I am blessed that my family doctor has taken me back even though it will be a long drive to see him, he has been my family doctor for most of my life so I trust him - which is a HUGE deal to me!

Now that I've learned a little more about MS, 4 years ago I was told by my eye doctor that I had macular degeneration and was sent to a specialist whom told me I was fine. I know I'm not fine in that aspect. I am having eye difficulty - hard to focus, shimmers, light flashes etc.

Also after being diagnosed, I thought back and probably 8 years ago my left hand went numb. I went to my family doctor and he referred me to a specialist (can't remember what type of dr but most likely a neurologist). I was in a bad way and situation back then so I didn't go to the appointment and the feeling came back in my hand so I ignored it and forgot about it until a week ago! Now, I am thinking that was my first sign of MS which is why I was able to be diagnosed so quickly this time. When I see my family doctor I will ask about this.

I'm on this site looking for support and understanding as well as information. I'm sorry for rambling! I'm just hoping that by getting this out in the open, I am able to cope with it better as I have been more depressed and anxious now. I'm very open and friendly so don't be shy to say hello. I hope all of you are feeling well and if I can help in any way I am here.

Thanks for your time.
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Re: Welcome to ThisIsMS

Postby jimmylegs » Thu Sep 13, 2018 8:35 am

hi and welcome, TT :)
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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