newly diagnosed: Hello. I was just... - My MSAA Community

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newly diagnosed

Smartcloud1981 profile image
18 Replies

Hello. I was just diagnosed yesterday with Ms. I had been experience off and on weakness, numbness on the right side of my body for about week. I did not have a primary yet till april so I finally went to the er because even though the episodes do not happen very long or every day I was getting really concerned. They did a MRI and found spot on the brain and cervical area. They tried to do a lumbar puncture but could not get any fluid. I was given vitamin D to take for not and no other medications since the symptoms arent happning all the time. I am not waiting for the specialists office to get back to me to set up and appoinment with him to see what we need to do. I am very scared because my mom had ms and fought for 10 years but it was not enough and passed away in 98. I know lots of things have changed since then, and everyone is different. My uncle also has ms but you would never know. So for now I am scared, and angry, but I will remain as optimistic as i can.

18 Replies
pmbevac profile image

Smartcloud1981 , hello & welcome to our little family. Seems strange welcoming someone into a world of uncertainty and fear but if you have to go through something like this, may as well go through it with friends.

Your experience with your mom & uncle is kind of a double edged sword, you are already do familiar with MS that the fear of the unknown is largely gone, but then again you KNOW this disease and what it can do. My mother-in-law suffered for many years (possibly the bravest person I ever met) before she passed. So when I was diagnosed a little over a year ago I went through that knowing exactly how it affected her life and saw that as my future. But you are correct. We all are affected differently and there is so much more help today than even 10 years ago. so I should not place her life experience with MS on myself and do what I can to stay healthy, the symptoms at bay and hope & pray for the best.

Let us know how you get on with the neurologist.


Smartcloud1981 profile image
Smartcloud1981 in reply to pmbevac

Thank you. It was a shock but not really. I had the feeling it was what was going on. I was just hoping it wouldn’t be. My mom fought till the day she died. My uncle you would never know has it. So I’ve see a few sides of it. So far the symptoms are very minor they do not last long yet. The neurologists I saw in er which was quite a few were helpful and optimistic. I’m just going to take care of myself. Fight as hard as I can.

I will be sure to let you guys know what the neurologist say.

janetb1968 profile image

Hello from UK I was diagnosed yesterday so I know how angry u are and im just really stunned aswell take care x

Janet UK

Juleigh21 profile image
Juleigh21 in reply to janetb1968

janetb1968 We have all been where you are. Stunned, angry, grieving b/c we aren't who we use to be. I believe you're a nurse. Gather the best team of docs and medical personnel you can. Ask questions right here. You'll get lots of help and hear other people's experiences. Good luck!

janetb1968 profile image
janetb1968 in reply to Juleigh21

Thank u juleleigh21 I will ur very kind and yes im a staff nurse with 20 years in surgery and now work in Endoscopy in the NHS.

Take care Janet B x

Smartcloud1981 profile image
Smartcloud1981 in reply to janetb1968

I was pretty stunned as well even though I had the feeling it’s what it was. You take care as well.

janetb1968 profile image
janetb1968 in reply to Smartcloud1981

I had the feeling aswell im stunned but not surprised x

Juleigh21 profile image

Smartcloud1981 I like your positive attitude! I have an aunt who died from complications from MS and a first cousin who is 6 years older than me but was diagnosed quite young and never did any meds. He's in pretty bad shape. I'm so much more fortunate than either one of them. Meds are working pretty well! Advocate for yourself always and don't be afraid to lean on the MSSA and the National MS society. They are a wealth of info. Good luck and keep fighting!

Smartcloud1981 profile image
Smartcloud1981 in reply to Juleigh21

Thank you. I’m trying to keep positive. I’m sure I’ll have days where I won’t be. I just know I have to wait to get all the information. All I know right now is it’s ms. I will lean on mssa.

Morllyn profile image

Smartcloud1981 , keep calm. Getting stressed can cause worsening of symptoms, as you may already know. We understand the fear and anger because most of us have had, and still may be having, the same feelings.

Go to the specialist and see what you need to do next. You can do this.

Smartcloud1981 profile image
Smartcloud1981 in reply to Morllyn

Thank you. I’m trying to not be to stressed about. Yes I’m going to wait to see the specialist and then see what they say.

erash profile image

Hi Smartcloud1981

Hope u can get in with the MS specialist soon and get started on treatment. Welcome to the chat room 🖐

esther57 profile image

Getting diagnosed was the biggest crisis of my life. Now it’s 25 years later. So Hang in there it will get better. Treatments are better now ! You have a great chance of having a great life. Get yourself to MS center. Take great care of yourself. Don’t push yourself to the limits.

Kenu profile image

Things are crazy to begin with and as we get more info and let the Lord take over it gets easier with 🙏 Hope you find the right medication 👍 I have been 22 years and still going. I Have a AFO for footdrop and use a walking stick when tired. Worked for 21 years until cancer struck, another story. Still drive and able to get around pretty good 🤗 Nice to meet you and hang in there 😉🙏🙏🙏🙏❤️Ken

cljones profile image

@smartcloud1981 I was finally diagnosed in 2014. I had been having problems for years but no major ones until 2011. Then in 2013 I had a major problem were I couldn't hardly walk, it still took over 6 months to finally get diagnosed as MS. I researched and diagnosed myself. When the doctor finally said it was I was relieved I knew for sure. Then reality set in and the fear of what was going to happen set in. Mine has continued to progress. The dmt's haven't stopped the progression but have slowed it down. Now I use an afo for food drop and a rollater. Also I have a wheelchair for using when shopping or any where there is more walking involved. I am the only one in my family that has it. This is a great group because they understand anything that you my be dealing with. There is always someone who understands and has helpful suggestions.

Hang in there it's a long road took way to many years for me to get diagnosed. Mine started with short episodes of left sided weakness unresponsive left foot trying to get out of bed for work fall to ground and call in sick because no communication to left foot left leg, severe electrical pain started 15 years prior they said it was all fibromyalgia but I knew the unresponsive foot and leg were not fibromyalgia and vision changed in 07 showed spinal lesson but nuero missed it until car accident in 2011 MRI comparison said lesson had grown. Anyways, first med rebif injections second year in I had serum sickness. Now on tecifidera it's a pill. Mutch better choice for me you can still see damage to rebiff injection sights darker purple on me. I hope you find the right med. I get my power chair on Dec 27th. The attacks get way worse way longer lasting what was a foot and leg turned to whole body arms as well usually on left but a lot of times both sides. Lost my job in 2008 due to MS and almost 10 yes later still fighting for social security. This group has helped me get through some rough times and I think I only joined like 4-6 months ago. Good luck

Yooper profile image

Smartcloud1981: Stay positive. Your attitude makes a lot of difference. You are in our prayers 🙏. God's Peace

jackiesj profile image

Welcome Smartcloud, I too had a cousin pass away with MS and we were born same state and close.Others now refuse to be tested but are ill.I have been diagnosed over13 yrs and life is different in each case even when we are related.You must still be grieving over all of the previous and the now of situations for yourself.Heart goes out.Prayers go to all.We each have a day or minute at a time....we are here....

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