I’m 18, and I’m suspected of having Multiple Sclerosis. It’s basically confirmed at this point due to all of my abnormalities.
I one day woke up with vision loss in one eye at 11 years old, and it occurred two times when I was 11. And it lasted 3 hours both times half of my vision was black. And it adjusted after a few hours. But I suspect this was my first sign of MS so I had it when I was a fucking child.
When I was 17 I started waking up with pins and needles or numb hands and feet. And then got facial twitches, and severe tinnitus. My symptoms are now unbearable. I can’t stand it.
I am unable to say I have multiple sclerosis. My life hasn’t even started, I have no friends or life. And it’s already ruined. I wish I was normal everyday. I also have autism.
Written by
Lifesucks_1
To view profiles and participate in discussions please or .
First of all, you ARE normal. "Normal" is relative, and you just happen to be dealing with things that most people never experience.
I am sorry that you're struggling. Does your family generally provide the emotional support you need? It sounds like you might benefit from some talk therapy. I'm not saying that you need a shrink, but you do need someone who can really listen to what you're feeling. Every one of us needs a support system, and right now you're feeling overwhelmed.
I'm not autistic, but I also have had issues since I was about 10. Other than a few odd things, they didn't start negatively affecting my life until I was 15. It's definitely a PIA sometimes, and it took me many decades to get a diagnosis. Back then there was no treatment for MS, so I think that most doctors didn't bother diagnosing it unless the patient became wheelchair bound. I think that actually helped me more than if I'd gotten an early diagnosis. Yes, it was hurtful and frustrating to be called lazy or told there was nothing wrong with me, but it also gave me the chance to learn how to just do the best that I could in any situation.
Since you say that it's "basically confirmed", does that mean you've had MRI's and maybe an evoked potential or lumbar puncture? If not, you need to find a neurologist who can steer you in the right direction. Once you get a diagnosis, you can discuss treatment options.
All that said, your life is not ruined. It's just not what you envisioned for yourself. I had to change my career goals at 15, but I still got an advanced education. I had to give up a few beloved activities but found new things to do. I worked full time from 19-55 and raised a family. Life is what you make it, and you still have a lot of good years left. Asking for help here is a step in the right direction, because we've all been there and have your back.
My dear, let me assure you that while it feels like it is over, you have a marvelous life and opportunity ahead of you. I have had symptoms of ms since 1990 and a diagnosis since 2006. My life changed drastically and I was very, very sick for a long time. But I am doing great now and I’m a believer that your life will be great too. If you don’t have friends, then you need to put yourself out there and do some things which will allow you to meet people. It’s difficult, but believe me… they don’t come to us. We are all here for you. You can private message me or anyone here anytime. I’m sending you love and hugs and support. Kelly 🤗❤️
why dont you get a tier 3 MRI with contrast? I lost my eyesight at 17, same as you. Doc said it was migraines (😡) as i grew up pain and other symptoms. Doctors along my life line, i was dx with fibromyalgia, arthris, yearly pneumonia, etc etc. 2016 a doc who was curious whi i was dx with burning tongue syndrome. So, the T-3 contrast MRI. Showed all my old and new lesions in right brain. He said the onset was when i was 17. I do hope you can find an intelligent neurologist.
Thanks for sharing part of your story. Agree with what others have written. Good respectable doctors are out there. You gotta fight to find them. Same for friends. They don’t just come to you. Find your people. There are good treatment options out there that can help you feel TREMENDOUSLY better. It’s worth the trial and error. There is hope. Don’t give up. Saying a prayer for you 🙏🏼
Welcome! It is unclear where you are in the diagnosis process, as testing is what confirms the disease. You have scans to do next?
An ophthalmologist should be testing your eyeballs every year. I had magically recovered vision issues also, but it is permanent damage now. That's my warning to everyone, don't assume your eyes are ok.
I am sending you this email in response to your post. It is my understanding that you have recently been diagnosed with Multiple Sclerosis. I hope this note may be of some help.
I have suffered with MS since being diagnosed in 1986-and consider myself fortunate, loss of sensory abilities, muscle spasms, weakness, loss of balance and parcel sight have all affected me but it is only within the last 10 years that I can’t drive and only within the last 7 years that I have had limited individual mobility, I am now in a wheelchair.
MS is an insidious autoimmune disease with no cure. It affects everyone differently and the progression is different for everyone. The disease attacks the coating of the body’s nerve endings and leaves a scar (sclerosis) which stops the body from its normal nerve functions. That is a very scary diagnosis but there is hope.
The only remedy for guys like me years ago was to load me up with steroids and hope for the best. Now there are a host of disease modifying treatments available, still no cure but a real measurable delay of the progression.
In the past thirty years I have learned what helps with MS.
1. JOIN the National MS Society, MS Foundation and the MS Association of America they are a wealth of information, you are not alone, these organizations report the latest research and successes, club activities and may help with such things as cooling vests so you don’t overheat to body lifts to help you to get up from the floor when you fall because you have limited balance and muscle abilities. MS Society and MS World Inc. have great monthly publications, The state chapters of the MS Society are also very helpful with programs and information. The Indiana chapter of the MS Society supplied me with stretching guides that I use to help with my spasticty.
2. DO NOT put your faith in any one neurologist. I have gone through a few over the years ranging from incompetent to really very knowledgeable and helpful but to get ahead with this disease make an appointment to a research and treatment center such as Mellon Center at Cleveland Clinic in Ohio or Rush University Hospital Neurology Department or University of Chicago Neurology Department in Illinois. Check medical coverage to see who is on your network.
3. MUST CHANGE DIET. This is tough but cannot articulate how important this is, we are what we eat and it affects everything with MS. I can recommend three cookbooks; Runners World Cookbook, Mediterranean Diet Cookbook there a bunch to choose from and The American Heart Association Cookbook when you seriously change your diet good things start to happen but it is very difficult to get into the routine, but I believe it does help slow the progression of MS dramatically.
4. GET AS MUCH SUN AS POSSIBLE, expose as much skin as you are comfortable with weather permitting, all is best, but some is good. The more exposure the more vitamin D your skin naturally produces, up until the last few years MS was known as the white man’s disease the highest concentration of people with MS per 100,000 is Scotland and Finland the lowest being counties like Indonesia and Brazil therefore a lack of vitamin D may contribute to the disease. Exposure to the sun in moderation is good, I also take a vitamin D tablet daily, no definitive clinical proof but I think it may help can’t hurt.
5. AVOID EXTREMES IN TEMPATURE, too cold causes problems and too much heat and humidity really causes problems. Just try to stay in 70 and safe and outside when possible but again be careful not to overheat or get chilled.
6. AVOID STRESS, IF POSSIBLE, like diet and lack of vitamin D, no definitive clinical proof, that I know of but I believe we experience a lot of stress in daily living which I believe is a contributor. Try not to worry and be happy.
7. THERE IS SOME HELP WITH MEDICATIONS, most of the disease modifying MS drugs are tier 5 specialty drugs which are very expensive, organizations such as Patient Access Network (PAN) Foundation and other foundations try to offset costs. These organizations rely on donations to help fund their programs. They can help or not help according to their current funding if nothing else is worth applying for assistance.
I hope this note is helpful. I imagine many of my recommendations can easily be refuted but this is what has worked for me. Just remember that you have to get up every day and continue to swing the but do not go gently into night, fight against your fate and fight against this injustice to your life, we certainly did not ask for Multiple Sclerosis, but we do have to live with it.
Sincerely, Peter Banfich
Favorite Quote:
“In the midst of winter, I finally learned that there was in me an invincible summer.” Albert Camus
Hello Lifesucks_1 , and welcome to this forum. You are going through a lot but there is so much available to make your ‘ms’ more manageable. 1575 has given you a lot of resources and may I add one more which is ‘attitude is everything’. Also, I encourage you to visit mymsaa.org for more information on ‘ms’. I look forward to hearing more from you. 🤗
Yes, this is overwhelming and you will grieve the life you had anticipated. In reality, we never know what life will throw at us and we learn to adapt and adjust as life moves forward. Grieve the life you anticipated but don’t give up on the next chapter.
I had my first symptoms at age sixteen but didn’t get a diagnosis until age fifty-five even though my younger sister was diagnosed with it 25 years earlier. She kept telling me I had it but I ignored her. When I finally got the diagnosis my doctor said I was fortunate because there was so much they could do for it and I thought he was nuts! This was in 2008 and only three disease modifying drugs, now there are over twenty and much more effective. I have gone from not walking to walking, with a cane and without, pain, tingling and fatigue and back
Like so many have mentioned, lots of treatments for the symptoms too. Don’t let this overwhelm you, take it slow and get reputable information. Check out Dr. Aaron Boster on YouTube, he’s kinda corney, but explains everything better than any doctor I’ve seen. (tried to download a link but it wouldn’t work today)
If you can get to a MS clinic or specialist, do it! I live in rural Idaho now and there’s no one close but before was in CA and able to get into Scripps Ranch. I can tell you there is a huge difference in neurologists so keep looking until you can get someone that will fight with you.
You have found a group that gets what you are feeling and hopefully you will find a connection here. Try to take a deep breath and take it one step at a time. Don’t give up, get a confirmation of the diagnosis and get on a disease modifying drug ASAP. You really are at a good time to get this disease if you have it. Things are getting better all around and if you haven’t had an official diagnosis, you just might not have it. It’s a great imitator because it has so many different symptoms.
I’m praying for you and please let us know how you are doing. 🤗🙏
Hi 🩶 I was just diagnosed 3 months ago and I'm still not sure it has set in with me yet. I felt the same rush of "my life is over" when they told me the diagnosis. All I could see was the future my husband and I dreamed of slipping through my fingers. I too felt my life was over and I still have moments where I look at my daughter and my heart breaks not knowing what my future is. In the short time I have been on this page, I have seen so many positive posts and reassuring replies to questions and concerns. I feel your pain and I'm so sorry you're going through it. I wouldn't wish it on anyone. I don't have a lot knowledge yet in comparison to a lot of others on here, but I feel I found a good outlet to learn from and talk with those who understand. I hope you can find the comfort in it as well.
You must see a neurologist. Your regular doctor can recommend one. They can get you on a drug that will slow the progression. And that's important if you're young.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
My brother in law 
looking for recommendations re. Emergency alert necklace or bracelet?
Emotional support for wife of husband with MS
Lemtrada
so we meet again…
