MS vs ALS: Under 20 Diagnosis?

[helpmeout]

I was going through the posts and I came across one that really stuck in my mind- I think it was on pg.10 and the topic was ALS vs. MS and there was a response up there that said that someone's brother had MS before the age of 20 and was not diagosed on the initial attack.

Well I am 21 and I had a scare at 18 and I had two mris done and both came back negative- I was wondering it anyone could help me out with this- can they MISS something during an initial attack???

I have had a current brain mri that was neg. and a full spinal mri that was neg. ,but there was no contrast used... I have a neuro appt. next thurs with
a new doc. and I have already been to a neuro this time- but she did not even examine me or anything- she told me that there is nothing that she could do for me and told me that I had somataform disoder. I can take that - only problem is that I have problems in ONE leg. If it was somataform it would be more diffused don't ya think??


Furthermore- my family practictioner had his nurse call me today and ask if I had schedueled an appt. with Mental Health yet and she told me that if I didn't agree to go along with his suggestion then he would not see me anymore!!! WTH??? I am NOT CRAZY!!! What if something is going on and everyone thinks I am crazy and turns there backs on me?? No one understands... my husband tells me that i ma driving him away and he wont listen to any MS talk anymore. I am soo alone with this- sometimes I feel like I should just check myself in...I just wish that things where the way they were just two months ago.I felt normal and I didn't even appriciate it!!!

Can someone please help me with this- especially about the MS symptom thing and the first exacerbation w/o dx. I am soo scared.

Thanks,
Amanda

 

[darric1]

I'm not a MS expert, but I had the MS scare also and did some research on it back then. If your brain MRI was negative there is a very very very slim chance you have MS. Also, MS does not usually present itself with twitching. That usually comes further down the road. I think 70% of the time MS presents itself with visual disturbances such as loss of vision or blurry vision in one eye. Do a search on LisaLM's posts and you will get much more info on this. She also went through the MS scare and she is much more knowledgeable about it than me. I read her posts and it made me feel much better.

I also know how it is to drive your spouse and doctor crazy. I did the same thing. The reason you are driving them crazy is because they are convinced you are fine and that this is all in your head. Believe them, especially your doctor. He/she knows what he/she is tlaking about. And it sure does sound like your doctor is CONVINCED you don't have MS. They have done enough testing where you should also be convinced.

 

[leighht]

Amanda,

Honey, you do not have MS.

Early onset( teens-twenties) is VERY rare. If you have had an MRI and no lessions were seen, you are fine. I promise!!!

My friend was diagnosed with MS two years ago, she is 45. She woke up one morning and could not feel her left leg from knee down. Her leg was not a little numb. She had zero (0) feeling. She could touch lightly, *beep* with a pin, have someone step on her toe and she felt nothing but a little pressure. 30 minutes after her MRI the good old doc reported finding multiple lessions. She received her MS title and is on meds and doing great. Just returned from a week at Disney witrh the grandkids!!!
The point is, after her very first MRI, they knew, There was not a doubt. She DID not have a clean MRI. You do...... Breathe.......relax....You are fine.

You will live a long, glorious life but you MUST stop obsessing on this thing.
You do not have MS or anything with initials!!!!

Peace and blessings,

Leah

 

[LisaQ.]

Amanda,
The key to what you are sharing is that you had an "episode" at 18 and your mri then was negative, as was your recent mri as well.

If you had *s, the current mri would NOT be negative. It would show brain lesions. It is possible early on in the disease (like the first six months) for brain lesions not to show in very rare situations.

But you've now had two sets of mri's and you are golden.

Somatization most certainly can and does present in one limb as does- guess what? BFS!

Please, please avoid going on line and doing research about *s. You will read all kinds of stuff on the internet from all types of people. You can't believe everything you read. Just because you are sane and have common sense doesn't mean that others are, or do.

As for what your doctor's nurse has said. Grr. What can I tell you? If you do in fact have bfs, it is often treated by doctors as if it were entirely an anxiety disorder. I believe (even though it is correct to a degree) that is a grave injustice. We who have had these symptoms really experience them and don't appreciate being told we are just crazy when we so obviously feel unwell.

Yes, anxiety wreaks havoc with our bfs laden bodies, no question. You need to get a grip on your anxiety or your bfs symptoms are going to go through the roof. Anxiety in itself is severely disabling.

But, no one should tell you that your symptoms are all in your head if you have bfs. Lots of people have anxiety, but don't experience twitching or perceived weakness, or tremors, or buzzing, or tingling, etc.

It is the old chicken and the egg scenario, and really-who gives a flying flip which came first? The two situations combined are lethal, no matter the order of presentation. The only significance is that the anxiety, if uncontrolled, WILL make your bfs symptoms much worse. It's sort of like when hurricanes come, then the damns break and there is great disaster and flooding. Initially, we don't think so much about which one happened first, we just try to deal with the catastrophe and chaos that abounds. But ultimately, we are going to need to address the broken damns or else the flooding is just going to continue to get worse.

So naturally, I believe if you can put this fear of *s thing behind you, your symptoms will start to dramatically improve over time. Trust me, I had every conceivable symptom of *s and even had one doctor diagnose and treat me for it. Try clawing your way out of THAT black hole, lol.

There is a very real, and very goofy little syndrome called bfs that is totally BENIGN and causes ALL of these symptoms. Many doctors don't even know it exists, or they know only teensy bits of information compared to the rest of us who have lived it. My own doctor, who happens to be brilliant, has only ever treated one other bfs'er in his 20 years of practice.

No one has become disabled from bfs or ended up in a wheelchair. In fact, many of us have moved on to live even more blessed, healthy, fulfilled, and beautiful lives than we ever thought possible for ourselves before. It is like a most divine of wake-up calls that gets us to focus on what is important in life; love, love, and more love.

You are so young to be wasting your energy worrying. Honest to God, I doubt if anyone was more terrified of *s than I was. I had myself dead and buried within months, and if I hadn't died, I would have taken my own life, I felt so hopeless and alone. I drove my husband crazy looking for 1 story ranches to move into. I couldn't walk, drive, feed myself, could barely swallow, was tremoring all over my entire body, drooling, and I even collapsed in the hot shower.

I am not fearful anymore, and it isn't because of clean mri's or good reports from doctors, (though I had all of those things.) I'm afraid it isn't even because some credible, caring neurologist actually sat me down and explained my symptoms to me or gave me a solid diagnosis. It is only because of this board, and the very special people who inhabit it, that I am now not only SURE that I don't have *s, but I barely ever even have bfs symptoms anymore.

This can your portion, your promise, your peace too, Amanda if you can only get past this fear of *s.

Pm me anytime, if you need help, ok? I'm away sometimes for the weekends, but I do check-in as often as I can.

Blessings,
Sue

 

[StephG22]

If you had ms you would have brain lesions and an abnormal spinal tap. There are specific markers in the spinal fluid. My brother has had ms for years yet you'd never know by looking at him now. Don't worry if your mri & spinal is normal--you're just wasting your life away. Trust me I've been there.

 

[Diego4Life]

Amanda, I was a little older that you when a neurologist told me that he was looking for MS. He arranged an MRI which was normal, but said to me afterwards that it doesn't always show up, blah blah and we should wait and see. I spent t too long worrying about it before getting a second opinion from another neuro who actually laughed and told me I did not have it. Several years wasted worrying about something that never manifested.

Bottom line is if you have had symptoms, then it is almost certain that the lesions will show on an MRI. It is the best diagnostic tool for detecting MS. Please don't waste time worrying about this and get on with living.

Best wishes,

Diego4Life