Worried I have MS.: Hi, I have recently... - My MSAA Community

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Worried I have MS.

Christrev profile image
21 Replies

Hi,

I have recently been referred for a CT scan and MRI brain scan after having strange dizziness sensations for the past 5-6 weeks. I'd describe my dizziness as not having any motion in the room but more that I can feel myself moving in my head such as going over a speed bump or braking in the car but this happens when I am simply sat or laying down doing nothing.

I also got some tinnitus and some headaches and have been having strange twitches in my foot and hands.

I am really worried that the scan is going to diagnose a problem like MS - I know this might come across as rude to people who are struggling with it and I'm sorry for that.

I want to know whether any of you suffered with anything similar to what I described before you had your diagnosis and I was wondering what the prognosis looks like for someone with MS? Can you still lead a normal life and do active things? Can you still live to a normal age and do all the things like have a family etc.

Thanks

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Christrev profile image
Christrev
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21 Replies
Juliew19673 profile image
Juliew19673

Hi Christrev, glad you found this board and sorry for your worry. I was DXED (diagnosed) 5/15/18 so not quite a year ago and yes, I had similar issues just previous to my DX (things seemed to be moving, when I was not). I hope it's not MS but if it is know it's not all doom and gloom, just a roller-coaster of a disease. You can still live a wonderful life, have children, be active, a lot of that. Is dependent on you. It is HARD but doable!

Royjr profile image
Royjr

Hello Christrev, I understand your question on MS but know that this disease effects everyone differently. I experienced some of the same issues you’re experiencing. MS isn’t a death sentence, it’s a life sentence. Just like everyone when you take care of yourself, eat right, excerscise (if possible), don’t smoke, don’t drink (drink in moderation) and just live a healthy lifestyle, one could live a long happy life. There are some challenges but that’s life. Good luck.

Royjr

falalalala profile image
falalalala in reply toRoyjr

Well said.

greaterexp profile image
greaterexp

You certainly are not rude! Keep in mind that it's early in the diagnosis process and your symptoms may be related to something else, which may be more or less benign in nature. I think it was a good idea to start looking for support as you go through this diagnosis. We've all been where you are and understand the anxiety of not knowing. Many of us actually felt relief at having an answer to all the weird symptoms.

Should what you have be MS, this is a time in which we have so many more options for DMTs (disease modifying treatments) and help with symptom control, and more are opening up all the time.

We are here to support and encourage you any time you need us.

mymsaa.org/

Kenu profile image
Kenu

Yes I have some of the same symptoms. You could ask for a spinal tap to help confirm? I have had MS for twenty four years now been on seven different DMT’s over the years. I have a leg brace for drop foot so I stagger a little. I worked for twenty one years after diagnosis till Cancer ♋️ stopped me. Yes I still drive and get around so it differently is not live ending 😃. We just learn to adapt and move on👍. Hope things work out for you 🙏😉 Ken 🐾🐾

carolek572 profile image
carolek572CommunityAmbassador

Christrev You are certainly not rude, you are just very concerned. Nobody wants 'ms' or any other disease for that matter. 'ms' is not a life ending sentence as many in this forum can tell you. You can certainly adapt in spite of 'ms' and can still lead a fulfilling life. The key is to adapt. Let you medical team assist you in determining if you have 'ms' or something else. I did have some of your symptoms, but not all of them. Everyone is different.

Stay Strong,

Carole :-D

kdali profile image
kdali

Hello and welcome! No worries here, none of us want the diagnosis either! 🤣 I had some syncopal episodes where I thought there was an earthquake and then blacked out for a few moments. I have tinnitus that comes and goes, but nothing too annoying so far.

It depends on what you do with it and what your limitations are, but it is possible to live an active and seemingly normal life after this diagnosis.

Christrev profile image
Christrev

Thank you so much to all of you for your replies and reassuring words.

I've gone through a few stages at the moment of anxiety and worry as the symptoms have come on to then basically shutting my life down as I'm worried of blacking out if I try to be as active as I'm used to. I then became calm and accepting of what might be. Now that I have been arranged for a scan I am anxious again as I can picture the words being said by my Dr. that would change my life forever.

Just feeling very scared at the moment about the things that could happen which I don't have any control over.

RoyceNewton profile image
RoyceNewton

g'day Christine, I might suggest some 5mg valium for the MRI, keeps you still and helps you sleep through it. The mir machine ask for a higher Tesla machine, probably a 3 is good. They do not go much higher publicly than 4 I believe. Good luck and if it is ms, do not worry it is a very very doable illness today.

Guava69 profile image
Guava69

Hi Christrev it's quite natural to be anxious and scared. Prayers and blessings are with you from the forum for the best possible outcome ☺️🙏🏽☺️I've learned in life and especially since my ms diagnosis to control what I can control. I can only control me..no one else but me. Whatever the testing outcome you're already started controlling what you can by finding this forum and getting some credible and compassionate input. Stay Strong ☺️🙏 ☺️

BigMar7 profile image
BigMar7

Christrev, I was diagnosed over 14 years ago at the age of 56. At that time, my neurologist had to test me for all sorts of things as people were usually not diagnosed with MS at that age. So it took me three years to be officially diagnosed. Try not to get too anxious waiting for a diagnosis. And know that MS is a disease you can adjust to, with the right attitude. I hope they find out what’s wrong with you. ❤️😀😎👵🏼

anaishunter profile image
anaishunter

I was diagnosed with MS because of vision issues (completely different than your symptoms). but in hindsight, I had typical MS symptoms for years. Overall, my MS was diagnosed early enough that it's all under control with disease-modifying treatment (DMT). MS made me better in many ways. Like many people have said, healthier lifestyle.

Get yourself checked. If it's MS (and I really wish for you that it's not), get a proper diagnosis, get under treatment fast so that the disease progression is stopped. Then life goes on.

Christrev profile image
Christrev in reply toanaishunter

At what age were you diagnosed?

I'm 24 years old and wondering whether this is pretty early if I did get a diagnosis to be able to do something about the symptoms

mrsmike9 profile image
mrsmike9 in reply toChristrev

There are people who are diagnosed young. (I was not.) That being said, my life got BETTER when I was diagnosed because the meds are so much better than earlier. Before being diagnosed I fell ALL the time. The last time was bad and I broke my arm in 4 places. When I got the MRI after I told my GP I was falling all the time, he sent me for the MRI. They called me back and said it "suggested" I might have MS. After the spinal tap (which was not as bad as I thought it would be) I was actually relieved to find out what was causing me to fall. I'm on my 3rd med as the 1st two I had reactions to, and I've been stabilized. Yes, my brain gets foggy, but NO more falls for me. I'm in a better spot than before I got the meds to help me. If you do get diagnosed with MS or something else, it may be to your benefit because you might be better off with a pill a day that gets you back to a better normal!

anaishunter profile image
anaishunter in reply toChristrev

Hi Christrev - I was diagnosed last year at 52. Hard to tell whether MS was there 2, 5, 10 or even 25 years ago. The fatigue should have alerted me earlier. I feel so much better now under treatment and got my life back. Let us know what the final dx is.

Timeflies5 profile image
Timeflies5

Warm greetings, Christrev...you did the right thing in reaching out to this wonderful supportive group...you are so not being rude. I encourage you to just live in the moment...take it one step at a time.

I did have similar symptoms with the lightheadedness and occasional migraines, but please keep in mind there needs to be a ruling out period of other possible disease processes by your doctor (of which your MD is already doing). However, it seems something is off which needs attention.

Ms is also known as the “snowflake disease” as there are no two cases exactly alike...only similarities. Many people can live long productive lives with MS and many learn to adjust to the challenges it may bring on whatever level...but when we think about it...that seems to be the book of life anyway.

Gather a strong support system of family, friends and even personal faith. We just take it one day at a time and do the best we can with what we have. Don’t worry about the past...that’s already gone and has lead you to where you are now...and don’t fret about the future as it is not even here yet. Just fully embrace the moment of the day at hand. You will be in my thoughts and prayers...please keep us posted if you like...God bless you friend! 🦋🌺

leking1 profile image
leking1

Good Morning, Christrev, I was diagnosed 37 years ago, long before you were born, and I still lead an active healthy life. When I was first

diagnosed, there were no drugs available to treat MS, the MRI wasn't

even available yet. I did have some of the same symptoms you are experiencing, but over the past 37 years, each relapse has been different for me...I no longer have relapses. Please don't worry...it may be nothing to be concerned about. Get your tests done, get the results, and whatever the results are, live your best life, each and every day!

Be Happy!

scooterjon58 profile image
scooterjon58

Chris, you're now at the scary time. I just wrote 4 articles about my Scary Days way back in 1991. You can read them at scooterjon58.com. You are probably on edge but try to relax. If you do have MS you'll discover one day that you have no control over it because MS can do whatever it wants to do. Over the last 28 years my MS has gone from relapsing remitting to secondary progressive. I used to have relapses but now I don't.

As far as a normal life I think I've led a pretty normal life with the exception of working out in public. From my diagnosis to when I got really disabled was 20 years. I wish I'd done more things in those 20 years than I did. I've married twice, divorced once, had a son, got lots of exercise working out, went to sporting events and concerts before I became really disabled. I'm 61 now and hope to make it into my 80's! My neurologist told me long ago that MS people live a normal life span. I have lots of different MS articles at my blog. Good luck to you! scooterjon58.com

DIsneyQueen profile image
DIsneyQueen

Hi Christrev, I hope you get some answers . Know that will be a relief for you. If it is MS that won’t be so bad. You are much younger than a lot of us, but the drugs and treatment are much better than when we were diagnosed. I was diagnosed 7 1/2 years ago and have PPMS. I am 65 and not where I wanted to be at this time in my life, but this is where I am . You learn to make the best of every day and live your life to the fullest. I exercise a lot. Travel and do whatever I want. I am just slower. You will probably do better than your friends and family. Be patient with them as they try to “ take care” of you. They need time to adjust to the new you too. Please keep us updated. You sound like a smart , proactive individual. All attributes that will help you manage this path successfully, you will be in my prayers.

Christrev profile image
Christrev

All of you have been so very kind in your comments and the advice I have received is so useful and has calmed me down a lot, I feel a lot better know that if MS is the diagnosis then there are things that can be done and an early diagnosis means starting those things even earlier.

Thank you all so much for being incredible and helpful people!

Christrev profile image
Christrev

Hey everyone,

I got my scan results back on Monday and I don't have MS or any other condition detectable through brain MRI or CT of sinuses. It seems highly likely that I have some minor ear problem causing dizziness and crackling in my ear and the rest of the symptoms have been a case of major anxiety and scanning my body for things that could be signs of MS. I want to say thank you to everyone for all the advice that was given and support when I first posted in here, I found the comments really reassuring at a time when I didn't know what was going on and you're all great people. Thanks, Chris.

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