Hello,

I’m writing to your forum because, quite frankly, I am extremely fearful that my life is changing in a way I would have never ever expected one year ago.

I am 55 years old. I grew up in Iowa. I now live in Albuquerque, New Mexico.

I experienced two visual field cuts last year, one in July and one in September. Because I have a history of atrial fibrillation—I had mitral valve repair surgery in August of 2005—my docs jumped to the conclusion that I was throwing emboli. An embolic cause seemed to be ruled out after an MRI, MRA, carotid echo, and transesophageal echo. Nonetheless, my cardiologist and electrophysiologist convinced me to begin Coumadin therapy until such time that another cause could be determined.

In late November of last year I experienced my first episode of utter fatigue. I was out of it for about four days.

My vision was blurring on occasion, but my ophthalmologist could see nothing wrong inside my eye.

I had more episodes of fatigue this past winter and also noticed a weakness in my right leg. I had been going to a cardiac rehab center to workout 3X a week for an hour. The leg weakness had me cutting my sessions short.

On April 20th I woke up feeling very different. I have been experiencing the utter fatigue every day since then, sometimes accompanied by a low grade fever. I have stopped going to the cardiac rehab center. I’m losing my legs. My gait has been affected. I must walk very slowly. Standing for more than ten minutes has me reaching for a chair.

I’m having cognitive problems and also some difficulties with speech.

Since April 20th I’ve experienced two more visual field cuts (while on Coumadin) and my vision is blurred more often than not. My ophthalmologist thinks now that the problem is behind my eye. She has referred me to a retinal specialist. I see him tomorrow.

I’m going downhill . . . quickly!

I am a biology professor and a chair of my department. I am not teaching this summer, but I am continuing with my chair duties, although with difficulty. I am terrified—I feel that I may have to give up my job.

A rheumatologist I saw two weeks ago has agreed with me that my symptoms point to MS. I currently have an appointment to be reevaluated by the neuro doc who ordered my MRI/MRA last fall—but I could not get into see him until July 6th.

I’m going back to Iowa to visit relatives next month, so I put in a request to be seen at the Mayo Clinic in Minnesota. I haven’t heard back yet.

Susie

Hi Susie. Welcome to NeuroTalk. Have you been to a Neurologist that specializes in MS yet? Lots of things mimic the sx of MS. If you've got an appointment for July to have an MRI done I guess you'll just have to wait to get those results back...unless your doctor can have one ordered on an emergency basis if you feel things are getting worse.

It's scary not to know what's causing strange sx. Most of us with MS have been through that "limbo period" of not knowing and trying to rule things out.

I hope you get some answers soon. There's lots of caring and supportive people here who understand what you're going through so don't be afraid to post questions or just vent your frustrations.

Getting that initial appointment with an MS doctor can be VERY difficult.

If it is MS, you are probably having an exacerbation.

I can only tell you how I went about it. I saw my PCP and he ordered a spinal MRI. The radiologist saw lesions. Brain MRI's can see lesions, I think that is a better tool for dx but someone else here will probably be able to correct me if I am wrong.

Although I was having problems, I could not get in for that initial appointment (just like you).

My brother told me to go to the emergency room ASAP. It is mandated by law that a neurologist be on premise at every hospital. So I was admitted, saw a neurologist (irony is that he was the one I was scheduled to see later in the month), and had a lumbar puncture which confirmed the dx.

I was put on steroids for 3 days to help stop the exacerbation.

I was dx'ed in 2005.

Sorry you are having all this happen. Let us know how we can help.

Welcome to NeuroTalk, Susie. I am so sorry as to why you are here, but glad that you found us.

Since the trouble started with your eyes, I would suggest seeing an Optho/Neuro. Optic Neuritis is often a first symptom of MS.

Good luck with your tests and please come back and keep us posted.

Again, Welcome..

welcome to NT susie.
i'm sorry for the reason you're here but you've come to the right place.
do you have a good internist or pcp?
they can often coordinate a care team with you and get you referrals.

i'd try to be seen by an MS specialist, even an MS opthamologist.
you can also get MD names from your local MS society (1-800-FIGHT MS).
it does sound like your sx's could be MS but of course the physical exam, history, labwork and tests will need to be done.

a neuro will usually start by ordering labwork to rule out other things that can mimic MS. and, they'll usually order an mri of the brain and possibly the c-spine.

please know that the process of being diagnosed can take some time, there is hope IF you are dx'd with MS. there are 5 approved medications that help to stop progression. and other meds that can prove helpful.

you are your own best advocate and sound like you're doing everthing right.
please also talk to your pcp. start keeping a sx (symptom) journal with dates and sx's. it will prove helpful in tracking your history.

please keep us in the loop. we're here for you.
ps, i'm an RN so understand a bit of biology.
being proactive and gaining knowledge will help decrease your fear.

Hi Susie,

I just also wanted to suggest that you see your primary care specialist and see if he/she will order an MRI. I know that mine did based on my symptoms, and then I was referred to a neurologist after the report indicated MS. I then had to undergo additional MRI's and a LP in order to recieve the official diagnosis. I was dx two years ago at the age of 50. I guess I was fortunate in that I was dx very quickly (less than one month), and put on iv steriods for five days. While they did not seem to help me, many do experience a shorter flare after being put on steriods. In particular, they seem to help improve optic neuritis if one is put on them quickly after the start of a flare.

I am also a Professor, and I will admit that at times it has been difficult for me. I teach Political Science. I dream at times of an early retirement. I cannot imagine also being the Chair of a department.

I think that we would all admit that there are days when we are afraid. Hang in there.

I know you are very scared right now. And it's easy for me to say try not to worry. But, my sister who is 52 was having very similar experiences to yours and the neuro she went to was almost certain it was ms, especially since I had been dx with it. But much to his surprise after doing all the testing, there was nothing to support it. So he began treating the indivdiual sx. and she is doing much better now.

It is a very scary thing. And you are smart to seek good ms doctors so they can get to the bottom of it. Then hopefully they will be able to get you on an appropriate treatment.

There are a lot of knowledgeable and caring people here at NT. So I hope you can get the comfort you need to help you get through this time. I wish you the best.

getting past that initial 'why me?im a good person' feeling is the hard part. not that it gets a whole lot easier after, but if you remember nothing else about MS, remember this....MS does not mean what it used to. it does not mean your life is over. it just means some changes are in your future. wether you go with conventional meds or alternative treatments there are way more options for you to consider than there were just 10 years ago. search the forums for whats available,ask whats out there. dont be afraid of asking a stupid question. the only stupid question is the one you didnt ask.theres loads of people on these boards to talk to and pretty much all of them have been through 'limbo-land' too.

Hi Susie and another Welcome!! Sorry you have to be here, but under the circumstances it's a great place to be with lots of support, information and caring. Hopefully your problem will turn out to be something different, but as has been said, MS isn't like it used to be. I've been diagnosed for 19 years with probable 13 before that. Optic neuritis was the beginning symptom for me.

Also wanted to mention that I have Mitral Valve Prolapse and have had three episodes of Atrial Fibrillation. Fortunately they corrected with meds in the hospital, but I'm on Coumadin (warfarin) too. I've always thought it's a good thing we don't know what's ahead for us in this life, but we just try to make the best of it.

Feel free to ask questions, vent, or whatever. We know what you're going through and are here for you!!

Hugs........

My heart goes out to you. I've taken care of patients in the hosp. with neurological disorders like yours. I'm not saying MS because you have not been diagnosed with it thus far. I do hope you get an appointment soon at Mayo Clinic in Rochester. I had been on a waiting list for about a month and my appt is in Nov, IF my insurance will cover it. If not, we cannot afford it. It is a little hard to pray at times when you're going through so much, but I'll pray for you. I've been praying on my rosary for so many people lately, it's about worn out!! Take Care!!!! Cheri