Am I losing My Mind?

[Cbinurse]

Hello..I'm a 45 year old nurse from Canada. 10 years ago I started exhibiting symptoms..neg MRI and spinal tap..fatigue, weakness etc persisted. I worked for an MD, had to stop working , was granted disability. Two years of struggling,then..I felt wonderful..symptoms disappeared..I went back to work as a visiting nurse and had two more great years..then..boom..blurred vision, paresthesia, weakness,,events occurring approx twice a year..fast forward to a year ago..due to constantly having " bad days".

I started working part time..in Oct of last year, I hung up my scrubs for good. During all that time, I did not see a neuro..not after the previous neg tests. His last consult with me had him recommend a psych assessment!! So I pretty much felt like I was losing my mind.. In the last 5 months, I have symptoms consistently. Legs encased in setting concrete, brain mush, pins and needles in left arm and leg, blurred vision,..and the FATIGUE..OMG!!

I had an MRI last week and finally going back to the neuro who I think thought I was crazy ,next month. What if the MRI is again negative? As a nurse, I have been taught to think in an either Its neg or pos mindset. I'm afraid, how can I get any kind of help without a diagnosis..I was told it was probable MS..I don't even recognize myself anymore..I miss my job..help..I'm sorry for rambling..I can't talk to my family..I don't want to stress them, and I hate to complain because I've cared for individuals with terminal illnesses..but is this how it is going to be from now on..how do you cope..help me..I'm so sad...and frustrated..

[COLOR"Navy"]** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **[/COLOR]

[SNOOPY]

Hello Cbinurse,

You are over thinking It's easy to do --- what if all my testing is normal, maybe I am crazy, AND what if the testing isn't normal

Try to remain calm and wait for your Neurology appointment and the MRI results. If they come back normal maybe it's time to step away from MS as the cause for your symptoms and work with your PCP to find the cause.

Best wishes

[jreagan70]

Hi Cbinurse:

It doesn't sound like you're losing your mind. But what is does sound like is, a long time ago you got some wrong ideas that led to wrong conclusions that over the years led to more wrong ideas and more wrong ideas and more wrong ideas, and now your thinking is so far off track that you don't know where you are.

It sounds like you're still trying to come to conclusions without having enough information to do that, and then freaking out because you can't do it because reality is stopping you, and the ways you used to cope (under the unrealistic conditions) aren't working anymore. You haven't lost your mind, but you've run out of coping mechanisms and don't know what to do.

What happens to us and how we respond to what happens are two different things. By our actions, we can influence what happens to us, but we don't really have any control over it. Worrying about the unknown and the uncontrollable -- like what's going to happen depending on what your MRI shows -- is just a waste of your precious time and energy. It's no wonder that you're mentally drained.

You don't have any control over your MRI or what it means, but you DO have control over your thinking and where to put your attention. It sounds like you could use some help in getting your thinking back on track and learning some new coping strategies to fit your new situation.

When you're feeling like this:

brain mush

and like this:

how do you cope..help me..I'm so sad...and frustrated..

... it's logical for you to go directly to the people who can help you with that. Your family and friends and the Internet are not the right people.

So your neurologist's suggestion of a psychological evaluation is actually right on target. A neuropsychological evaluation can help you to find areas where you may be having cognitive problems that are affecting how you function. And getting into therapy with a mental health professional can help you find constructive ways to deal with your sadness and frustration and get you back into psychological balance.

The key here isn't your symptoms or your MRI or what your neuro -- or anyone else -- says to you. The key is how you respond to it. And with some practice, you can learn how to steer your attention and thinking in a healthy and positive direction.

You're not losing your mind. It just sounds like you could benefit from the guidance of mental health professionals who can help you guide it back to where you want it to be.

[BadAttitude]

Yup, you're definitely crazy We're ALL crazy.

Of course you're not, OP. You managed to succeed in a high-pressure, intellectually demanding professional occupation for years, show evidence of leading a happy , productive life, and people at your age aren't prone to turning up with schizophrenia. Given your track record of normalcy, even superiority...I'm gonna go with something is going on.

Remember any patents you dealt with that you thought might have a been a wee bit loopy? I bet they had their days too, but I'm sure you never told them it was all in their head (unless it was, lol). Don't you deserve the same consideration?

Patients deserve the truth or an honest "we're not sure but we'll keep working on it till we are."
They just can't figure it out. Keep after them. Good luck.

[zilphia01]

diff neuro?

Is it possible to find a different neuro? I would have already lost confidence in the first one..... even knowing how hard it is to diagnose this hideous loss of life..... I had to find a new neuro after my wait of 7 years led from hand tingling to exhaustion and then 7 years later to Optic neuritis and a diagnosis.....

I personally have no confidence at all in the first neuro

[mjan]

Well first of all, I am sorry you are struggling. Your story and symptoms seem so familiar. I too was told probably MS but would never rule it out. Well when I had to leave this neuro's practice due to job/insurance change, he said I do not have MS.

Next set of docs say, I think you have MS. Lots of lesions, but not the right shape for MS. Have a relapse, while working, and again, they think I have MS. Finally the right lesions for MS show, get 2nd opinion, yes it is MS.

Had two Neuro psych evaluations due to cognitive issues which ended up costing me my career (health field). and they thought I was having seizures. I did have abnormal EEGs but not seizure disorder.

Neuro psych test picked up some other things, but I think in your case this neuro wanted to see if anxiety/depression were causing your symptoms. I even had one psychologist say it was "conversion disorder" which to me is a cop out when she has never examined me.

Next neuro pysch psychologist knew exactly what other disorders I have so rule OUT conversion disorder. To my credit being undiagnosed brought me to a marvelous primary who knew who to send me too. Seems I had 2 rare disorders which would've been missed or told it was all in my head LOL

Another neuro said they miss MS sometimes because their MRIs just aren't as sophisticated for those lesions which are deeper I guess.

So hang in there. I feel for you and will be available by email if you ever need to talk. See my profile for my email address and identify yourself from MSWorld k?

Sending you good vibes to figure this out and get you the help you need.
I do think many docs blame symptoms on anxiety/depression more as a cop-out when they really do not have enough evidence of the perfect diagnosis.

Hugs, Jan

[palmtree]

I'm going to put it simply. If your MRI comes back negative, YOU ARE NOT CRAZY!
Any doctor who tells that to a patient should lose his license. There are many things that can go on with the body that can still not be measured or quantified or detected on an image.

So, don't doubt yourself! If it comes back negative, pay attention to your body and continue to seek relief. If it comes back negative, rejoice. That means there is no permanent damage to the myelin and your body can completely recover. Vindication will come later. It always does. Don't waste energy seeking it.

[Thinkimjob]

Not a doctor. My theory given that I have no new lesions after 15+ years, but I can hardly walk now, is this.
A lesion can be detected, like a cold sore. What if all the myelin just kind of gradually thins out? Like washing off spray-on tan?

Why do lesions occur in specific areas? What is different about that particular place?

Is the myelin covering spinal nerves thicker than that covering the nerves in our brains?

[KoKo]

Not a doctor. My theory given that I have no new lesions after 15+ years, but I can hardly walk now, is this.
A lesion can be detected, like a cold sore. What if all the myelin just kind of gradually thins out? Like washing off spray-on tan

Thinkimjob ~ you may not be too far off from what might be happening.

A new study at Northwestern University Medical demonstrates a surprising new possibility that the death of myelin cells happens first, and then the immune attack (MS inflammation) happens in response to the dead cells.

So with this new theory, the myelin is slowly degrading anyways, with or without an immune response (MS inflammation). That would explain why the DMT's don't cure MS, they just stop the inflammatory attacks which cause additional damage.

I have PPMS, no relapses (inflammatory attacks), and yet the myelin is still being damaged from something. What is that something causing the myelin cells to die initially?

[/I]http://www.northwestern.edu/newscent...ell-death.html

[BadAttitude]

Great link, KoKo, thanks for posting that. I always figured once they isolated the process behind cell death, it wouldn't be long till they assigned a timeline to specific points during the process. Once they had a time line, maybe they'd get more specific targeting strategies.

Thinkimjob ~ you may not be too far off from what might be happening.

A new study at Northwestern University Medical demonstrates a surprising new possibility that the death of myelin cells happens first, and then the immune attack (MS inflammation) happens in response to the dead cells.

So with this new theory, the myelin is slowly degrading anyways, with or without an immune response (MS inflammation). That would explain why the DMT's don't cure MS, they just stop the inflammatory attacks which cause additional damage.

I have PPMS, no relapses (inflammatory attacks), and yet the myelin is still being damaged from something. What is that something causing the myelin cells to die initially?

[/I]http://www.northwestern.edu/newscent...ell-death.html