Should I just wait to get worse?
 

My neurologist told me that since my MRI is clear there is no possible way I can have multiple sclerosis. They told me that there pretty much no explanation for what is wrong with me and that I am fine. I'm not sure if I have MS but I really don't feel fine.
I was a college sophomore and I was pretty active, I made good grades and went out with friends. At this time, I cannot go grocery shopping without becoming completely exhausted.
My symptoms started in the fall when I couldn't take a hot shower without my left arm going numb with sensations of pins and needles. My friends told me to go to the ER and I did, only to be told that this was merely a panic attack. My health got worse but I didn't do anything about it, I had convinced myself this all had to be in my head and that I was making myself sick. It didn't make any sense to me but it kept me going an entire semester.
I'm not in school right now and I don't know if I can/ should go back. I miss my friends, I miss my classes, I miss my old life. It seems that my life is put on some awful hold. I've given up on doctors, they seem so dismissive because of my age and its pretty obvious. I haven't once been to a doctor where I haven't heard something about my age, that I am too young to be this way. I have this terrible feeling that I have to wait until I get a lot worse to be diagnosed with anything (even if it isn't MS) and I'm scared that it might be years.
Has anyone else been through this and maintained their old lifestyle? Can I mentally ignore or get past these symptoms? What makes you keep going? Any advice on what to do next?

Hi, Bixbite! :Wave-Hello: Welcome to NeuroTalk!

Well, I think I am safe to say, yes, we've ALL been through much of the same as you. It's hard, it's frightening, it's discouraging, it's frustrating, it's time consuming, and it's necessary.

I was 19 when I was hospitalized for 6 weeks and told that I was anything but ill. Dozens of tests, etc. They even put me with a psychiatrist— I told him to fix me, I had to pitch in the playoffs in a couple days! When the exacerbation ended, I finished college, went on to a good career, and had a wonderful time of it. I didn't get hit hard again until I was 31, then, the hard hits started coming more often for me.

Your neuro is wrong, fire him and find another one. I'm guessing you're not quite 21 and this is no way to live. I honestly, sincerely, passionately hope that you do not have MS, but, if there is something neurological going on, you need to identify it.

Don't give up your life, don't plan on losing all before you've begun. Plan on finding the right "fit" with the right neuro who will address you as a responsible adult and help you formulate a plan. Period.

No doctor ever has a right to treat you like a fool. Ever.

Welcome to the board, Bizbite. Getting a yes/no diagnosis of MS is a long and wearying task. Sometimes it takes years. In my case it took decades. Being told that you are imagining your symptoms is very demoralizing. You’ve got to stick to your guns. Keep a journal of how you are feeling. That way you won’t forget over time. I know how frustrating it is to have your concerns dismissed out of hand. You’ve just got to hang tough, and don’t take that for an answer.

welcome!

and yes. I have done it. I was told I was young, healthy and strong, and needed to find better things to worry about. I was told I had migraines, and given MRIs that "showed nothing" and I learned to just get on with my life. Had flares here and there, but nothing drastic. Fast forward to 06 and my MRI shows a brain tumor. Investigation showed it was there the whole time I was "whining" and "putting on a show" but they never thought to bring it up. It was also clear I had MS.

The thing with MS is many of us have REMISSION which means most of our sx go into hiding, and we get on with our normal lives. The only thing we do differently with a dx is take a shot every day or every other that has about a 30% chance of calming the disease. Your best defense against this disease (with or without a dx) is diet, exercise, and a good attitude.

Many have been to an MS center, and its been discovered that they had enough evidence even with a clean MRI to be diagnosed (dx) or have shown up with a dx in hand only to be told it was Lyme, or B12 or Sjogren. There are more than 100 diseases that can mimic MS. Its a tough thing to rule in, or rule out.

It is very frustrating to be told to go home and stop whining (trust me I know) but after a certain point the MD in front of you runs out of answers. It may be time to see an MS specialist. Or Clinic that specializes in it. Make sure you have the normal suspects ruled out. Low B12, Lyme, Lupus, Sjogrens, and so on. Also many find that going on a clean or non processed food diet helps them feel better.

You are welcome to hang out, with or without dx.

I'm so sorry you are having to go thru this!

My best words of advice: FIND A NEW DOCTOR!

I sincerely hope you do not have MS - but it sure sounds like *something* is going on in there - find out what it is. Remember - this is your life - you need to be your own best advocate.

If all the neuro did was order an MRI - he failed you. Like the others said - there are lots of other diseases that have the symptoms you listed....many of which can be detected with blood tests!

If it were me - I'd find a new neuro ASAP and make an appointment. Then I'd also make an appointment with a GP for a physical and routine checkup and start getting everything documented.

You deserve to get back to your life!!!

Keep us posted!!!

Good luck,

~Keri

I agree with the others. Your neuro is flat out wrong that no lesions means you don't have MS but in any event even if its not MS you need to know what it is!

Don't give up because as with most conditions the sooner you can identify it and start treatment if you wish the better chances of staving off progressions. Wish you well.

:hug:

i agree wholeheartedly with the others.
look for another neuro. preferably an MS neurologist.
it's difficult for them to dx with a clear mri but you still need someone who will listen, validate and tx you like an adult.

i would also look for a good internist to be your pcp (primary care physician).
if you can, bring a friend or family member to your dr visit. sometimes that can make a dr listen better.

some of us get told it can't be MS because we're too old. age doesn't have anything to do with it. sx's are incidious. they're different for every person.
you know your own body best.

it is a good idea to keep a sx journal with dates you have certain symptoms.
the timeline can help the dr with a hx (history).

you are your own best advocate. keep looking and don't give up.
you might also call your local MS society at 1-800-FIGHT MS. ask for a list of drs that you could see. it might be a start. or, you might try a dr in a university setting.

welcome to NT. i hope you get some answers. please keep in touch with us.

Even with brain lesions, I was told that I did not have ms and that I needed to *talk to someone* because I was maybe *nervous*.

so nervous my feet felt like they were on fire?

:confused:


A few more tests and different docs, and they found out that somewhere along the line I had broken my neck and developed a syrinx (cyst) in my spine, and I probably do have ms (per my current neuro).


Some docs.... I don't know why they say the things they do. But YOU know your body better than they do. Try a diff doc until you find one who listens, believes and helps.


They should try to help your symptoms until they can figure out what is worng, at the least.

Do try to live as normally as possible meanwhile. Take care of yourself, listen to your body, and pay attention to what it needs. That's really all anyone can do, whether they're healthy or not, right?


Hang around though... you'll make a lot of friends here who'll help you through all of this okay? i don't know what I'd have done without these people!

Good luck!

Who is Bixbite and where did he go? :confused:

Sorry, I haven't replied (rude!) Thanks for the help. I'm still a confused mess but I'm guessing I will be for a long time! Anyway, I was referred to as "he" which I'm not. Bixbite is a red emerald and I know more about rocks than anyone should know. I really am not sure about going to another doctor, my old one made me feel like I was in a business meeting and looked at me like I was crazy.
Hope everyone has a happy Memorial Day!:)

Which is standard for some neuros...

:rolleyes:

:mad:

Don't let that one doc's bad attitude keep you from getting the medical attention you NEED and DESERVE.

Okay? Trust me on this.

12 doctors later myself. He's just some shmuck, really.


Would you put up with that from the guy who changes the tires on your car?

LOL....

Good luck.

My neuro told me the same thing. My brain MRI was clear and my physical exam was not very remarkable. I asked him to do a spinal MRI and he said it was a waste of time. He was so sure I did not have MS he took me off copaxone and stopped seeing me. Within a year I was hardly able to walk.

I went to a new neuro who did the spingal MRI and found lesions on my lumbar spinal column. He put me back on copaxone and after some time I was almost better again.

Do not accept what the doctors tell you. You know something is wrong and keep after them until they tell you what it is. Go to someone else if you have to. You owe it to yourself.