My name is Susie. I am afraid.
 

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. :hug:

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..:hug:

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.

Bless Your Heart...
 

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.:hug:

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........:)

Really sorry Susie. For what it's worth the MS clinic at UNM gets high marks and the doctor who runs it is really good.

Hello Susie! Welcome to the club house. :hug:

to diagnose MS is a process, its not a quick jump. Please remember that there are more than 100 diseases that can mimic MS. From a simple B12 def, to Lyme, Lupus, Sjogren, Vit D def, RDS, and so on. It take a while to rule out so many other things before deciding on an MS diagnosis. So, pull out your hat of patience, your gonna need it.

Keep a journal. Keep a symptom journal, and keep a medical records journal.

Keep track of whom you saw, and why, and what were the results.

Many of us found that going to the big boy MS centers were what finally tipped the balance one way or anther. Many require a lumbar puncture, and some can diagnose based on symptoms, and MRIs. It will take more than one MRI during a course of 6 months normally before they will start to talk seriously about whether they do or dont think this is, or isnt MS. There is a ton of blood work to rule out other things as well. Since MS doesnt have a blood test that pops up positive or negative we must rely on ruling out other conditions that do.

For now, try to be patient ( i know easier said than done) and get some rest, and learn to budget your energy. its exhausting to run from MD to MD to MD to blood tests, and to keep up your normal life while chasing a diagnosis. I do hope its not MS. I hope its something easy like B12 for you.

pull up a chair, and hang out. We will wait it out with you. :hug:

Hi Susie, I went to the Mayo Clinic when I was first diagnosed. I had a rheumatologist who thought it was MS but wasn't sure since it could be other things too -- I had a low grade fever and strange bloodwork (low positive for antiphospholipid antibody syndrome and recent Epstein Barr). Anyhow, the reason I got into the Mayo Clinic is because my rheumatologist directly called the Mayo for me. That put me right into an appointment with the Neurology Dept. of the Mayo Clinic. I believe if you try to go on your own they will start you out in general medicine. You might also consider going to the Mayo in Arizona or Florida. They are also great too and I bet the wait is not as long as the Mayo in MN. I had to wait 3 months and got an appt. on Dec. 26, kind of an off day. Good luck. Keep us posted. I'm sorry to hear of your troubles. :hug::hug:
Natalie

Dont forget to update your insurance before you get a diagnosis.

I didnt do that, and now wish I'd gotten better insurance.

Thank you from the bottom of my heart!
 

Thank you NT friends for your kindness, encouragement, and advice.
I am so glad I decided to post to this forum.
I want to tell you that I do keep a symptom journal and I have excellent health insurance (My husband is active duty military.)
I have also had blood tests to rule out vitamin deficiencies and anti-phospholipid antibodies. The retinal specialist I saw today told me that my visual problems are not due to issues within my eye, but are likely due to problems behind my eyeball.
I also want to tell you that I think I need to be more proactive.
I plan to call my primary care doc tomorrow to ask if he can intervene--help to expedite my neuro work-up.

Thanks so much!

Susie

Bravo Susie!!!:winky:

You're on the right track to find answers. Keep at it. Ask you doc(s) to do what they can to speed the process along i.e. finding a suitable doc and then for them to keep in touch with you during the process.

I wish you all the best and good luck and please don't forget ... we're here for/with support!!

Cheers!

Niko:cool:

Glad to hear you have good insurance......it's invaluable at a time like this.

I'm also glad you decided to join this group. It's such a source of comfort and support. Everyone here understands what you're up against. It helps to post thoughts, questions or just vent your frustrations here.......goodness knows we all do!! :p I had little to no understanding of what MS was when I was dx........I'd heard of it but never bothered to educate myself about it. I got a crash course! :rolleyes:

Here's a thread explaining what some of the common abbreviations used on the forum are. I was so confused when I first started posting here because I had no idea what others were talking about when they used the abbreviations for certain terms. Hope this helps you! :)

http://neurotalk.psychcentral.com/sh...=abbreviations

Welcome Susie!

Good advice from the others.

As it can take a while to dx whatever this is, let me add a thing or two. Don't be shy about using any method to help you cope with your symptoms.

It took a long time for me to get dx'd with some of the stuff, and still in ms limbo. So I held off using even the cane. Stupid of me.


I thought, if I don't really have ms, I shouldn't really need these things.

You know, you use meds to tx your symptoms, you use a knife to cut your food. Think of all these other tools the same way, whatever makes your day easier you use it.

The electric carts for shopping, a scooter to get around at work, etc, can save you tons of exertion.

Also keep in mind that fatigue can come and go. I have boughts for months at a time then it just goes away as fast as it hits. My first in fall '02 was one of the worst - I did not have it half that bad in the last year, and you'd think it would progress and get worse, but that's not always how it is.

And I'm glad you found us. It may be good for you to see how varied this can be - no two people have the same journey.


Good luck!

Good Going, Susie. I hope your PCP can get a team together for you.

Come here often and keep us posted..:hug:

shes gonna fit right in. I hope she doesnt need to, but if so, I have a feeling she is gonna be fun. :hug:

Hang in there

Good luck to you, and I hope your wait for a diagnosis isn't too long. I'm new to this site, and I like it a lot. I was previously at a different MS site that I don't want to name. There were some nice people there but the rules were ridiculous, and one of my buddies brought me here, thank goodness. But without that place, I don't know how I would have learned much about MS, since I don't know anyone with it!

I wouldn't have had a diagnosis so quickly (five months) if it weren't for my wonderful PCP. I was ready to quit all the tests, and I was doubting myself, wondering if it was all in my head. He kept assuring me I wasn't losing it and kept pushing me until we found the answer. I have everything from the other doctors, neuro, MS nurse & MS doc, sent to him to make my life easier, and I see him once a month, if only to get my Vitamin D checked. I've had really bad PCP's before, including one several years ago who told me I had a clean brain MRI when it really showed two active lesions--and I really feel blessed to have found the doctor I have now.

I wish I would have thought about insurance more though. Not health insurance exactly, but things like long-term care and home health care insurance, just in case. I tried to get vision coverage and was denied as well, even though I've never had eye problems beyond needing glasses.

Let us know how things go, and welcome to the site.

Hi Susie,

Sorry to hear you are having such problems. Also sorry to hear that your wait to get in to see a neuro is SO long.

Personally, I might look for another doctor and get in sooner. (Keep your July 6th appt anyhow - as you might want a second opinion.) Can you tell this neuro that it is an emergency? This sounds pretty emergent to me. Then again, I think that when it comes to these symptoms and problems with the brain - it is an emergency to me. But if this original doc can't get you in sooner than July 6th - I'd find someone else for now. Besides - you will need lots of testing done - so getting someone to start that as soon as possible would be good for you. Your GP could probably order many of these tests, too, but having a full neuro exam sounds like it needs to happen.

Wish I had more to offer.

Good luck and keep us posted,

~Keri

I wasdxed by a regular neuro. but he had guy doing evoked potentials in office, he did LP (Lumbar Puncture) himself and I had no side effects, Blood tests, but hated his manner, saw a specialist in MS Center at UMM (University of Maryland). 1st appointment took 2 months, after never had to wait for help or anything. Now go to Johns Hopkins MS Neuro., once in, no problems. Baltimore only 1/2 hour away. Getting right neuro hard. Can take awhile to find right fit.
I did 3 times, but they all moved away!!! On my 5th now. Was DXed only )?) 7 years ago.

What April says is true. Get insurance befor DX, once DXed with MS, Insurance hard to get. If going for Disability Insurance, if needed think about job specific so they don't insist you do something else. Once DXed, insurance hard to get.once I was DXed, we were sure to insure DH for Life and job specific Disability ($$$!!!!) but he is primary wage earner and college for kids coming up soon.

It's me again--Susie
 

Dear NT Friends,

I'm writing to give you and update and to ask some questions I'm hoping someone can answer for me.

I tried to self-refer myself to the Mayo Clinic in June. I was not awarded an appointment. I finally saw a neuro doc at UNM on July 15th.

My condition has gotten progressively worse over the past three months.
The daily fatigue, muscle stiffness/weakness, and blurred vision have caused me to give up my teaching duties for the fall semester. I use a cane now for treks of more than 100 feet or so.

A myriad of blood tests have all come back normal including tests for Lyme disease, B12 deficiency, thyroid hormone imbalances etc.

I had three MRIs on Aug 5th--brain, cervical spinal cord, and thoracic spinal cord--all came back normal.

A couple of questions here:

My first symptom--a visual field cut in one eye was experienced in July 2008. I have had progressive symptoms since April of 2009. How unusual is it for a person with MS to be MRI-negative under those circumstances?

My MRIs were performed on a 1.5 Tesla magnet w/o contrast dye. Terms such as T1-weighted, TSE T2-weighted, FLAIR, MEDIC etc. appear on my reports. Does any of that make any difference in the quality or resolution of the images?

I had a VEP study this past Monday--no results yet.

I had an EMG study today--results were normal.

The techs who performed my MRIs and my VEP, and the doctor who performed my EMG all asked me if I'd had a lumbar puncture yet. I have not.

Is that normally the next step??

Thank you for your help.

I am so grateful for this forum.

Susie

An LP is normally the next step, but usually follows positive test results from the MRI. What they are looking for in an LP is oligoclonal bands, which indicate myelin breakdown.

You need to know that there are folks here who have similar symptoms to what you are having and still haven't been diagnosed because they don't have enough evidence to be positively diagnosed and doctors hate to label someone with MS until they are sure.

It's commonly called "Limbo" here. I don't have any experience with "Limbo" since I was diagnosed after one incidence of optic neuritis, but there are folks here who can help.

1.5 tesla MRI is not the best, but it is what most of the hospitals have since MRI machines are so expensive. Having an MRI w/o contrast is unusual when they are checking for MS since it's the inflammatory process and lesions that are active that show up with contrast. T-1 weighted, TSE T-2 weighted, etc. are all terms used to describe the images they are taking.

Since you have had incidences of vision problems, I would say wait for the VEP results and go from there.

Even when the tests all come back negative, you know something is going on. It may be that nothing is showing on the tests yet, but it's happening subclinically. Have you done any steroids? A round of steroids may help to relieve the symptoms, even without a diagnosis. Talk to your MD about it.

Let us know what comes of all this! We are here for the duration and we care. :)

Limbo yes--steroids no
 

Thank you for your response. Steroids have not been suggested. I admit to being scared of them!

I'm in limbo too
 

Hi Susie,

I completely understand what you're going through!

My symptoms are driving me crazy - I'm frustrated, I cry most days, I can't do what i want with my 2 young boys (i'm also a single Mum) and I just want answers like you!!
Like you, my gait is effected too - I can't stand for more than 5-10 mins either, and at the shops I shuffle on a bad day, or on a good day I limp.
I did apply to the council and got a disabled sticker, even without a diagnosis - category 2 - which just gives me double the time in a car parking space. (can't park in a disabled space). But it helps a bit.
It doesn't effect my eyes, but I have lots of tingling, numbness, burning, stabbing pains, heat intolerant, rib pain lately, that might be the 'MS hug'....

My first brain & c-spine MRI and VEP were clear back in May. Contrast wasn't used. I'm due for a T-spine MRI in 10 days, 1 hour!! (not counting at all....)
My bloods are all clear - although Epstein Barr was also detected. (I think I had it as a teenager).

Someone correct me if I'm wrong, but is there a link between EBV and MS??

My sister has probable MS, and my aunt has it. (I've read there's a very small chance -10-15% of having MS if a family member has it).

My neuro tried oral steroids for me.
It only worked for the tingling and some numbness, and made me really tired. But it IS different for everybody. From what I've read on this forum it has helped a lot of people though.
Your neuro will discuss the side effects etc with you before prescribing. It's your decision though.

Please PM me at any time - the serach for 'finding out what's wrong' really sucks, and we need all the support we can get at this time.

:hug:

Michelle

Welcome from me too.

Sorry you're here, but what a great place this is. You'll find all the support you need here. They all give good advice too.

I just tend to prattle on about stuff, but most of the others can be relied on for good information. :eek:

I was a quickie. one week wait for mri then diagnosed within the hour. My brain looks like an apple tree. Hope you don't have to join us for long.

I don't feel so lonely now:)
 

Thanks for your note, Michelle. It helps to know I have company in limbo. I have heard about a link between EBV and MS.

No one in my family has MS. I am 55 years old.

Have you had a lumbar puncture yet?

Susie

Hi Susie,
No I haven't had a LP yet.
My neuro said she didn't want to do such an invasive test yet. As all the tests have been clear so far, i think she's just seeing what the next MRI shows.
She said after my 3rd exam she didn't think I showed any 'suspicious' neuro signs, even though my symptoms are 'suggestive of MS'.
I asked her directly can she rule out MS and she said yes!
But yet she still saying have another brain/c-spine MRI in November (6 months after the 1st one) to see what's going on, as 'the lesions can take a while to form'......
I'm confused.
I don't think they like to suggest you 'might' have a disease/condition unless they're really sure.

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

Hi and Welcome.
It took me three years to get Dx'd with MS and that was after I had symptoms the doctor could see on his exam. Of course they didn't have MRI's back then, but I had a VEP and a LP and many other tests for a week in the hospital..

I did not have classic symptoms, but presented with odd ones and weird tremors. Years before that I had symptoms that were sensory, things the doctor could not see, but I could feel, like buzzing in the body, shocks, swallowing problems, etc.

It was harder to rule in or rule out any disease in the stone age. But in 1981, still very young, IMO, I was dx's MS. They seem to think I had it since I was 16 years old.

It is sometimes a long process (years) and others get a DX in days. It is a "wait and see" disease.

You really don't want to get the wrong DX so as hard as it is to wait, it is for the best. We were all in Limbo at one time or other. I wish you both good luck in finding out what is wrong.

We all need to know what is causing all our crummy symptoms. We know we don't imagine them, they are real.

And yes it is scary at times. :)

you're right
 

Yes, I think your neuro wants to be very certain of the diagnosis before making any pronouncement. I think she is wise to suggest a follow-up MRI in November. I've have read that for some patients the lesions take a very long time to become visible on an MRI.

I wish you the best!

Susie

The only real requirement for a RRMS dx is "dissemination in time and space", so that means two neurological events, occurring in two separate neurological areas, separated by a 30 day break. They can assess this with either neurological exams (clinical testing) and/or a combination of clinical AND MRI/LP/VEP results.

In your case, it seems you have had at least one event, so they went looking for the evidence by way of VEP and MRI ... to no avail at this point. Given the number of eye events you've had, I would think the VEP would show if there is Optic Nerve damage by now. Did you end up seeing a neuro opthamologist for testing for optic nerve pallor?

BTW, they do not need to use dye in a MRI, to see what would be evident without dye too ... The dye would just more easily identify those lesions that are "inflammed", but you didn't have any lesions at this point anyway.

So, you are on "watch and wait", or in limbo for MS, at least until something else happens. A LP might show O-bands, which are not unique and/or will be necessarily visible (just like the MRI lesions), but it could be another piece to the puzzle if you do have them. This is an invasive procedure though, so you want to consider that. I have heard of a handful of people who've gotten the dx with LP results alone, but those people will normally struggle for YEARS before that happens.

MS doesn't always show up in our testing right away, but most of us do not have to wait very long before it does. I did a poll on another forum, and for those who were watched and tested appropriately along the way, and who did not have compounding health issues (like HIV, polio, etc.), the MS almost always becomes apparent within 6 months to a year.

You are obviously getting worse, so have they offered any suggestions on what this might be, besides MS?

Cherie

gosh susie, you've gotten great advice.
i wonder what the neuro exam was? was it normal or abnormal and in what way? what did the neuro tell you?

i think seeing an MS opthamologist is a good idea.
fortunately (or unfortunately) i was dx'd in 2 mos. + mri and lp.

stay on top of this with your docs. close follow up is a good idea.
sooner or later something will show up.

i'm sorry this is happening to you.
not being able to perform your job is very stressful.
what about a 2nd or 3rd neuro opinion? with an MS specialist.

Have you tried a spinal MRI? I probably would have gotten a quicker diagnosis if I'd gotten a spinal MRI sooner. If you're having trouble walking, you may have spinal leisions.

:hug:

Thanks everyone!
 

I really appreciate your responses.
To answer some of your questions.
I have had a spinal MRI. It was pretty much normal except for some degenerative changes and Tarlov cysts.
My last neuro exam showed irregularities in my stretch reflexes: patellar is hyper; Achilles is hypo.
I do have an appointment to see a neuroophthalmologist at the end of September.
I'm still waiting for the VEP results.
I'm fighting the blurred vision thing today.
Got to make this short.

Susie