A resource for people with MS--Long, but near and dear ...

jodijodi

jodijodi

Cathlete
Someone close to me is working on a project that we hope will be a great resource for people with Multiple Sclerosis. Please indulge me as I use this forum to try to get the word out...I do not intend for this to be spam. So many of us know people with Multiple Sclerosis that I thought this might be a good way to spread the word.

My stepsister Amy has had MS for 20 years. During that time she has discovered that in the process of trying to learn more about what is happening to her, she finds information that is sometimes more scary than helpful. MS is different for each person who has it. Some worst-case scenarios will never happen to some individuals, but it can be very disturbing to come across this kind of information by accident.

As a result, she has set out to create a website to allow those with MS to learn about their experience on their own terms. It is called MS SoftServe: http://www.mssoftserve.com/ The mission of MS SoftServe is to help people with Multiple Sclerosis embark on a lifetime of learning -- helping them better understand their individual experience with MS through anxiety-free access to information, resources and support. This site is designed so that the user will have the opportunity to learn in a meaningful way; a way that can be controlled.

This is a non-profit organization, and the site is still under construction. Right now Amy is looking for feedback, donations, and corporate sponsors. These sponsors are very interested in how many hits the site is getting, how many people have viewed her videos on YouTube, etc. If you have any interest at all, or know someone with MS, it would be great if you would visit the site, Amy's YouTube videos, or her Wordpress Blog, in which she discusses both the development of MS SoftServe and her own personal experience with MS. Please forward these links to anyone who would benefit from a site like MS SoftServe.

http://www.mssoftserve.com/
http://www.youtube.com/watch?v=t9Nc1JbgcU4
http://www.youtube.com/watch?v=Ey5lLVyH1bY&feature=user
http://mslol.wordpress.com/


Sorry this was so long. This project is very near and dear to us, and every "hit" helps! Thanks!
 
My brother has MS, I will be sure that all my family have a look. Thank you so much for the link.
 
Jodi,

Thank you so much. MS has touched me in a profound way -- my med-surg case study in nursing school had MS, and my hair stylist's father has it, as does my own dear sister and a cousin. I will pass this information along.
 
Thank you

Jodi,

Thank you so much for posting this info. I was just diagnosed with an acute onset of autoimmune hypothyroid (Hashimoto's) in February and now on top of that I am being worked up/tested for MS. I had a brain MRI last week and I have to get a spinal tap next week. I can't really believe this is all happening to me. I felt healthy and normal 3 months ago. Although I have great support from family and friends, I feel all alone and this is so helpful. Knowledge is power but the wrong kind of info is frightening. Thank you so much.

Sandra
 
sandra, i am so sorry to read of your health issues!
my mmom has ms and is really going thru a tough time right now.
there is strong evidence that ms is often misdiagnosed. what it actually could be is a wheat allergy/celiac disease. ive seen ms patients omit gluten from their diets and see a complete turnaround. theres a blood test you can have taken that tests your markers for it. quite often this comes up negative but theres a 2nd one you can take thhat is more in-depth and this is the one that catches the allergy.
so many patients get a dx as lupus or ms, use many different treatments that dont work....what they really have is celiac.
celiac will even show up on an mri w/ the "spots" like ms....
the only "cure" for celiac is DIET.
my mom sits around waiting for a drug to "cure" her and refuses to try anything "outside the box". it frustrates my siblings & i to no end!:(
good luck to you on your journney....((((((hugs_)))))
if you would like to chat more feel free to send me a pm.
 
Sandra,

I am so glad you were able to find my post! I hope that you are able to get the information you need, and I am sending many thoughts and prayers your way. I am happy that I can help, even in just a small way. (((hugs)))

Katy, sorry to hear about your mom's illness. (((hugs))) to you and your family!!
 
Kate, sending you a PM...thank you!


chefkate said:
sandra, i am so sorry to read of your health issues!
my mmom has ms and is really going thru a tough time right now.
there is strong evidence that ms is often misdiagnosed. what it actually could be is a wheat allergy/celiac disease. ive seen ms patients omit gluten from their diets and see a complete turnaround. theres a blood test you can have taken that tests your markers for it. quite often this comes up negative but theres a 2nd one you can take thhat is more in-depth and this is the one that catches the allergy.
so many patients get a dx as lupus or ms, use many different treatments that dont work....what they really have is celiac.
celiac will even show up on an mri w/ the "spots" like ms....
the only "cure" for celiac is DIET.
my mom sits around waiting for a drug to "cure" her and refuses to try anything "outside the box". it frustrates my siblings & i to no end!:(
good luck to you on your journney....((((((hugs_)))))
if you would like to chat more feel free to send me a pm.
Click to expand...
 
Jodi, thanks for the hugs, totally need them! I am in information gathering mode and this is so helpful. You rock. :)

jodijodi said:
Sandra,

I am so glad you were able to find my post! I hope that you are able to get the information you need, and I am sending many thoughts and prayers your way. I am happy that I can help, even in just a small way. (((hugs)))

Katy, sorry to hear about your mom's illness. (((hugs))) to you and your family!!
Click to expand...
 
Jodi,

Thank you so much for your post. I was diagnosed with relapsing remitting form of MS going on three years ago. It has been a terrifying journey having my body become this alien thing that does not comprehend moving normally at first it affected my balance and walking, then my ability to write or attempt holding a pen. Then my vision, I was legally blind for about a two to three or so month period because I got optic neuritis. Slowly my vision in that eye did return but was not a 100% as it was before. Now, I celebrate every time I can do simple things like write my name or type on the computer keyboard. I did alot of research online about MS and talked to my neurologist extensively about what I can do to help minimize MS's effect on my body. Early, before my official diagnosis my doctor told me that beginning disease modification drugs has helped reduce what the long term disability by minimizing the frequency of relapses. In the beginning MS hit me hard it was a snowball effect of relapses one after the other. I was terrified and I did chose a disease modification drug (Avonex), its really helped me. My disease has stabilized in terms of relapses which is great. My doctor told me about studies that suggest that exercise is especially important for people with MS. I have found lots of information that supports this online. I have found that exercise has really helped me regain my strength and mobility. I workout with determination and joy knowing that its a blessing. When I had my first MS relapse it left me physically week robbbing me of being able to be me. I couldn't even lift a five pound dumb bell. Now, I'm doing STS and lifting heavy and smiling the entire time. Its a blessing to be able to move, walk, or grip something let alone be strong enough to lift heavy weights. MS still effects me with fatigue and partial numbness in my right hand which is permanent and I have to use reading glasses and probably need my prescription changed on my reading glasses again, but that's just teeny tiny speed bumps along my journey with MS. I have found that exercise is a powerful ally in helping me to hold on to my mobility and empower my physical and emotional well being. I agree with what your sister said on wordpress blog. MS can make you different in so many ways and I think the main thing is to not let it take over just try to keep on fighting to be you. I do take Avonex and it has been a saving grace for me so I won't diss disease modifying drugs since its what we have until there is a cure. The main thing is to work with your neurologist and empower your self to be the best you can inspite of MS.

The hardest thing I've found is the lack of understanding or maybe its really a denial that my husband and kids have that I am different now and can't do everything for them I used to. It frustrates me they see me as lazy because I don't do everything for them now. I keep telling them I do what I can and that changes on a day to day basis. I have just so much energy to get tasks done each day and do what I need. They still don't get it. Its so frustrating to have a disability like this that to most of the world is invisible unless fatigue is at its premium that day. I now have limitations to work around. Its hard for me because I don't know anyone my age or around where I live to talk to that has MS to relate with. Oh well, that's something to pray about. I'm grateful for Cathe's DVD's to help me and the people on this board.

I think your sister's website is awesome and I wish her luck. I did check out the links you provided. Thanks for sharing the links, sorry about my rambling endlessly.

Hugs!;)

Nora
 
Nora, many ((((hugs)))) to you too. I cannot begin to understand the frustrations and challenges that you are going through, but I am happy that I am able to help in some small way. I'm so glad that Amy's links and information have been helpful. Thanks for letting me know also. I will let Amy know! Thoughts and prayers going out to you!
 
ellesan said:
Jodi,

Thank you so much for posting this info. I was just diagnosed with an acute onset of autoimmune hypothyroid (Hashimoto's) in February and now on top of that I am being worked up/tested for MS. I had a brain MRI last week and I have to get a spinal tap next week. I can't really believe this is all happening to me. I felt healthy and normal 3 months ago. Although I have great support from family and friends, I feel all alone and this is so helpful. Knowledge is power but the wrong kind of info is frightening. Thank you so much.

Sandra
Click to expand...

Sandra can I ask how you were diagnoised with Hasimoto's? I just went through a bunch of testing for MS including an electromyogram (EMG), and a brain MRI just last Thursday. The Dr's have done a whole bunch of blood tests and everything has come back normal. I am getting frustrated with all the tests because it seems like they all come back normal. I've had terrible insomnia, swollen lymph nodes, numbing in my toes both feet, and just last month my whole left arm turned numb for over 5 hours. I don't know if the Dr's even know what they are looking for and I'm begining to lose hope and I'm thinking of just cutting them loose and just living with the symptoms that I've been having.
By the way Sandra you are so not alone. I am sure I can speak for everyone here when I say that we are all sending you good vibes. I hope that the spinal tap goes well and that you can find the answers you are looking for.
 
janie1234 said:
Sandra can I ask how you were diagnoised with Hasimoto's? I just went through a bunch of testing for MS including an electromyogram (EMG), and a brain MRI just last Thursday. The Dr's have done a whole bunch of blood tests and everything has come back normal. I am getting frustrated with all the tests because it seems like they all come back normal. I've had terrible insomnia, swollen lymph nodes, numbing in my toes both feet, and just last month my whole left arm turned numb for over 5 hours. I don't know if the Dr's even know what they are looking for and I'm begining to lose hope and I'm thinking of just cutting them loose and just living with the symptoms that I've been having.
By the way Sandra you are so not alone. I am sure I can speak for everyone here when I say that we are all sending you good vibes. I hope that the spinal tap goes well and that you can find the answers you are looking for.
Click to expand...

Hi Janie1234

Can I ask if your Dr's checked your ana anti-bodies when your blood work was done? All my blood work was normal except that one. My ana anti-bodies were elevated and I was sent to a rheumatologist and was diagnosed at that point.

(I also started with numbing and tingling in my feet and hands)

Annie
 
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msmik said:
Hi Janie1234

Can I ask if your Dr's checked your ana anti-bodies when your blood work was done? All my blood work was normal except that one. My ana anti-bodies were elevated and I was sent to a rheumatologist and was diagnosed at that point.

(I also started with numbing and tingling in my feet and hands)

Annie
Click to expand...

Hi Annie. I just checked my lab tests and that was a test that was taken. It came out negative. Can test results change or elevate depending on the symptoms? The only test that came back elevated was my folate but she didn't say anything about it so I'm assuming that it is not a big deal. Does anyone know if the MRI deffinitively shows if you have MS?
 
Hi Janie,

I went in to get a physical and have my hormones checked because I went through premature menopause a few years ago and I was feeling particularly run down. When my labs came back, he told me I was hypothyroid, which surprised me. I had just lost 80 pounds and was in the best shape of my life and feeling strong with my workouts, etc. My ONLY symptom was fatigue and feeling run-down. I looked at my labs and I was low-normal but he suggested I would feel better getting treatment and gave me iodine as well as a "natural" thyroid hormone replacement. I asked him about side effects and he assured me it was safe and I would feel better. That was the beginning of my Hashimoto's nightmare.

Five days after I started taking the iodine, I started getting a lump in my throat and it felt like it was compressing my airway. It got progressively worse and I got really scared and called my doc. He never tested me for the Hashi's antibodies before giving me iodine and it triggered a severe autoimmune reation in me. It has been over two months and my thyroid is still swollen and compressing my airway and causing a lot of symptoms and I am scheduled to have a thyroidectomy in two weeks. Long story short, anyone with Hashimoto's should NEVER EVER be given iodine, it can cause an acute autoimmune attack and a goiter (swollen thyroid) that will not shrink. That is how I got diagnosed.

About midway through my Hashi's attack, I was having extreme weakness, extreme fatigue (couldn't get out of bed for 3 days on several occasions), had to stop and rest just blow drying my hair!!! Those symptoms are consistent with thyroid disease. My lymph nodes started swelling in my groin and neck. I started getting numbness in my hands/feet and arms and burning/tingling sensations all over my body. Went back to Endo and GP and they think it is not related to the thyroiditis, but a neuro issue, thus ruling out MS and other things. I have also had a ton of other blood work that was negative, but my brain MRI was positive for something and now I am getting the spinal tap next week. It is so overwhelming!! I never had any of these symptoms/problems until I was given the iodine.

Did you see my post about autoimmunity? Women are SO mistreated during the diagnosis phase!!! Sweetie, do not give up!! Ugh, wasn't the brain MRI terrible? It felt like I was in a machine gun or jack hammer. Keep fighting for a diagnosis. You have to be strong and keep pushing them to help you to find out what is wrong. Get a different doctor if you need to. The challenge is that many autoimmune diseases present the same way with similar symptoms and it's a process to find out what it is. I am sorry you are having these symptoms too. Keep me posted on what is going on.

Thanks so much for the support. :)

Sandra



janie1234 said:
Sandra can I ask how you were diagnoised with Hasimoto's? I just went through a bunch of testing for MS including an electromyogram (EMG), and a brain MRI just last Thursday. The Dr's have done a whole bunch of blood tests and everything has come back normal. I am getting frustrated with all the tests because it seems like they all come back normal. I've had terrible insomnia, swollen lymph nodes, numbing in my toes both feet, and just last month my whole left arm turned numb for over 5 hours. I don't know if the Dr's even know what they are looking for and I'm begining to lose hope and I'm thinking of just cutting them loose and just living with the symptoms that I've been having.
By the way Sandra you are so not alone. I am sure I can speak for everyone here when I say that we are all sending you good vibes. I hope that the spinal tap goes well and that you can find the answers you are looking for.
Click to expand...
 
Janie, the MRI would say something like spots or lesions in the white brain matter consistent with a demylenation process, and this would be suggestive of MS or it could be something else, like infection, or other white matter diseases. So no, it is not definitive and usually but not always a spinal tap is ordered to test for certain o proteins that are found in 90% of people with MS. I am certainly not an expert but I've been doing a lot of research!!

janie1234 said:
Hi Annie. I just checked my lab tests and that was a test that was taken. It came out negative. Can test results change or elevate depending on the symptoms? The only test that came back elevated was my folate but she didn't say anything about it so I'm assuming that it is not a big deal. Does anyone know if the MRI deffinitively shows if you have MS?
Click to expand...
 
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