It's definitely a tough call, deciding whether to disclose the MS to your employer. Some people work for very compassionate employers that give an MSer a lot of latitude when they need time off. Others, not so much.
I had to walk away from a job in which work stress affected me but I didn't yet have the diagnosis. Once I was given the diagnosis after starting another job, I didn't tell my employers I had MS, but I did tell one or two co-workers. I was abruptly fired after 18 months, but I'm convinced it wasn't that the VP knew about the MS, it was that he wanted to put another worker in my place. He said I had left some paperwork in my IN box before going on vacation, and that was grounds for dismissal, which was completely within legal bounds in an at-will employment situation.
Which is the main reason why most people lose discrimination cases, that pesky at-will thing. It's probably best to err on the side of caution in disclosing your condition, but it won't protect you from losing your job if an employer really wants to get rid of you for any reason.
I hope you are able to keep your job and use sick time when the MS kicks your ass. Please do keep us updated on your situation.
I once looked into that possibility when I was suddenly fired from a job. But the state civil rights people discouraged me. Research tells me that discrimination is very, very hard to prove and most plaintiffs lose their cases. It's also very expensive to sue an institution and can drag on for a couple years. A large entity like a corporation has the money to spend on that, but most employees don't. If the employee loses, s/he must pay court costs on top of legal expenses.
If you're thinking you can get free legal representation, I challenge you to find any civil rights attorney that would take your case pro bono. Most will not because your chances of winning are very low.
My advice is to not file a claim of discrimination at all. The employer can easily make a case that you were incompetent even if you weren't.
Although i understand your desire to push back at them, I think you'll wind up with a broken heart and a busted bank account.
Sorry I didn't respond to you sooner, my mom is in hospice dying of lung cancer and I do the MS patient advocate thing on another site besides this one. Jules gave you some good advice.
The way I found part-time work was by doing what I'm doing here on WebMD. I joined this site five years ago, initially to find a support group. Since I was a published writer and used to doing research, I quickly fell into a leadership position, answering questions posed by newly-diagnosed MS patients and old-timers who weren't internet-savvy or whose physical impairments prevented them from spending a lot of time on the computer.
I also created a blog on Google blogspot about living with MS. A few years ago, a marketing group found my work here and on my blog and offered me a position as a patient consultant. The other MS patient advocates I met there recommended me for a paid gig on multiplesclerosis.net. There, I give advice, help to moderate the site, and write essays about living with MS. I continue to be offered other kinds of advocate opportunities. I can get as involved in advocacy as I want.
I guess the moral of the story is to start doing something in a volunteer capacity that interests you. If you stick with it and meet others who are doing the same thing, opportunities will open up for you.
Have you asked your neuro about medications that might ease your pain and restless legs? You don't have to have any particular disease diagnosis to take such medications, and they could make you more comfortable while you're waiting to see the folks at MCG. Just a thought.
I always cringe whenever someone has been given the stress/anxiety diagnosis. It's something a fair number of doctors tell a patient when they don't want to investigate further.
When I was having my first MS attack, I saw six doctors, two of whom suggested I was suffering from stress, anxiety, or panic attacks despite my having brisk reflexes, a limp, and muscle spasticity. I knew it wasn't any of those things and I kept seeing doctors until a neurologist tested me for MS. I did have two spine lesions, and he put me in the hospital for IV steroid therapy. But I didn't get an MS diagnosis for another six years. It is a diagnosis of exclusion, there is no one definitive test.
You asked whether it possible for your symptoms to be a result of stress or anxiety. Anxiety has been documented as manifesting itself in many different physical symptoms, and yes, numbness, muscle weakness, dizziness, and a host of other things can be from stress and anxiety. My sister suffers from anxiety to the point of getting pain and numbness in one arm and feeling like she's having a heart attack. She was hospitalized and tested, but her heart was normal.
But ask yourself these questions: Do you have a history of panic attacks, extreme stress, anxiety? Whenever you have been very stressed, have you ever had such symptoms?
My advice is to keep track of your symptoms. If these things happen again, go to your PCP. It might not be MS, other conditions can cause these symptoms, too, including vitamin deficiencies. The main thing is to keep investigating until you get some answers and the proper treatment.
You are at a very tough crossroads, and one that I can relate to on some level. I did a similar thing after recovering from my first MS attack: Focused completely on work and after-hours research, lost my sex drive and any desire to date, and had no social life whatsoever. Doing all of that, focusing on only those things that I deemed important, did keep me from falling into a deep depression.
But after a few years, work stress took its toll on me and I was hounded out of my job, I resigned before I got fired, the hostility was too much for me. I worked for four more years at mostly temp jobs, but then had to retire on Social Security Disability. It was a tough process, having to find my value in things other than being employed. After I retired, I found a second career I could do at home part-time. Something I liked to do and for which I already had skills.
Focusing all your energies on your teaching might have been your coping tool, too, and now that is being taken away. And doing that probably saved you from falling into a deep depression, too. Now you've got to think about how to take care of yourself. Think about walking away from the battle, living on unemployment or whatever means are at your disposal.
Think about this situation not as a negative, but as an opportunity to reinvent yourself. You have skills you can use in a different way. Try to give yourself time to discover the possibilities.
And you can't do this alone, you need support, friends, love. Open yourself up to that need and draw people back into your life.
You need to take care of yourself in terms of disease management, too. Getting back into taking your meds and staying compliant is a gesture that reinforces the belief that you have value and are worth taking care of in the best ways possible. If you don't feel that way right now, then fake it until you can make it. It works, I've done it myself more than once.
Join MS communities and share, share, share. Isolating yourself is going to fuel your depression.
Cervical refers to the neck only. Thoracic refers to the middle portion of the spine, Lumbar is the lower back, Sacral is at the bottom.
I also have a herniated neck disc, as well as an arthritic lumbar spine and bulging discs from top to bottom. Degenerative spine disease can cause many of the same symptoms as MS. My first set of MRIs showed the herniated neck disc--and there was a lesion in the same place. My neuro could not determine whether the lesion was MS-related or a result of nerve compression from the herniation. This contributed to the six-year delay in my MS diagnosis. A lumbar puncture positive for O-bands finally convinced him I had MS.
I hope you'll soon find some answers at MCG. And please do give us an update. I hope it isn't MS, but if it is, you'll find a big network of support here and elsewhere in cyberspace. All my best to you.
High blood pressure is on the list of Betaseron side effects, so your neuro should have been monitoring that.
Low sodium and potassium are not side effects of that drug. Whoever ordered the tests that showed those results should have followed up with you.
However, you're right on the money about what you've taken away from this experience. Doctors aren't going to catch everything. We have to be our own advocates and ask questions.
In my own case, I ask for copies of my radiology reports whenever i get an MRI. One time I read a report about my thoracic MRI and it offhandedly mentioned that the MRI showed that I have gallstones and suggested I might want to follow up with a doctor about that. My neuro never said anything to me about it. A year later, I developed what turned out to be a gallbladder attack and went to the ER. I knew I had stones only because i read it on the report, and told the ER doc it was probably gallbladder. That isn't a big deal in itself, a lot of people have gallstones and never have a problem. The point is that I have to be vigilant and thorough and not expect my doctors to mention all those details that pop up. It's my body and I care most about it because i have to live in it every day. They don't.
If you aren't happy with your neuro, definitely shop for a new one. Sounds as though you've "outgrown" your present doc and need one whose awareness, concern, and communications skills are better.
As far as going off Betaseron, ask yourself some questions: Is it doing its job on your MS? If so, is it worth the side effects you might be experiencing because of it? Does Betaseron have anything to do with those low sodium and potassium levels, or is that deficiency entirely unrelated?
It's good to get a neuro's input on those last questions, but the decision is up to you. Some people go off their meds for a time just to see what would happen without it. Whatever you decide, you'll be okay. You can always change your mind. There are many other meds to choose from, including three oral therapies.
Hope you feel better now that you're watching the mineral intake, and hope you'll let us know what you decide to do. Good luck!
Have you had a spine MRI? Diagnostic testing for MS should always include the cervical MRI. I had no brain lesions on my first set of MRIs, but I did have two cervical lesions. If you haven't had a spine MRI, press your doc for one. Other tests for MS include evoked potentials and a lumbar puncture.
I imagine your doc is doing MRIs to rule out other conditions such as Chiari Malformation. That condition can affect bladder, bowel, balance, and legs since it involves the spinal cord. So can Multiple Sclerosis. This is a tricky one, several conditions can cause your symptoms. Migraine, like MS, is a diagnosis of exclusion. There is no one definitive test to diagnose it.
Among MS patients, it is possible to have clean MRIs for a long while before lesions begin to show. This is partly because of the limitations of MRI technology. We have gray matter damage as well as white matter, and the machines tend to be inadequate in picking up the gray matter damage, not to mention the smaller, scattered white matter scars. Doctors usually won't diagnose MS in the absence of brain or spine lesions.
I hear your frustration and totally understand the anxiety that accompanies a health mystery. The only advice I can give is to see another neuro for a second opinion. Better yet, find an MS specialist. It might ease your mind. Good luck.
I'm sorry about your friend's troubles. We do take methylprednisolone therapy for an attack, but I'm not familiar with what you call hormone treatment.
There is no cure for MS. There are several different treatments we can use in the US, the UK, and the EU. Some are taken by injection, some by infusion, and some are pills. They reduce the number of attacks and slow the progress of the disease. Here is a list:
Having MS is very stressful for the patient and for the families. Sometimes marriages fall apart. Your friend needs understanding, help and support. She needs to rest and eat well. She can have a quality life, but she will have good and bad times with MS.
You can help her by learning about MS. There are numerous sites on the internet for that, including here on WebMD. Other good sites include:
National Multiple Sclerosis Society Multiple Sclerosis Association of America Multiple Sclerosis Federation Multiple Sclerosis Resource Centre at: http://www.ms-uk.org/