funny business

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apeter
New Member


Date Joined May 2010
Total Posts : 12
   Posted 5/26/2010 3:54 PM (GMT -6)   
I am a 24 year old scandinavian female and I have lived in the southern US for most of my life. My young adult life has been a relatively healthy one, outside of having flat feet and being prone to ear infections, but my medical history is peppered with strange neurological episodes.

The first was when I was 19 and I experiences a tingling sensation in my hands and a bout of terrible sleepiness. I went to my GP and she discovered that my B-12 was a bit low and prescribed injections, but she set me up with a neurologist just to be safe. At the appointment with the neurologist he said that my B-12 was low, but not by very much and that he wanted to order an MRI to rule out MS. My MRI came back clean and I finished my injections and all was forgotten.

Fast forward to a little over one year ago. I had been experiencing some really nasty headaches and some just general fatigue. But then one morning I woke up to double vision. It lasted for a couple of hours and then went away, but my eyes hurt, like someone was rubbing the back of my eyeballs with sandpaper. And every morning for a week I would wake up to a delightful few hours of double vision. This being an out of the ordinary occurrence I made plans to see an ophthalmologist. When I saw the doctor he did a full exam and told me that it could be a number of things, but that he wanted to order an MRI and send me to a neurologist to rule out MS. This time I had a battery of tests done checking for thyroid conditions, myasthenia gravis, lyme disease, vitamin deficiency, and others.

Meanwhile, I wasn't feeling any better. I had a couple of bouts of vertigo and I discovered that I had reduced sensation in my feet after I stubbed my toe so hard it bled and I didn't notice until I left a bloody sock print on my floor. I finally got in with a neurologist and he did an exam which revealed reduced reflexes and sensation on my left side and I almost poked my eye out trying to do the finger to the nose trick. After the exam the doctor said, "Well, all of your tests are negative and your MRI is clean, but I really feel like this sounds like MS. But, we can't really do anything about it for now so here's some steroids." With this unprofessional encounter and the development of excruciating electric shock like facial pain I decided I wanted a second opinion. This time I went to the source, an MS specialist in Atlanta. I failed his neurological exam pretty spectacularly as well, but by this time my symptoms had been persisting for almost 2 months. The MS specialist said that without anything on my MRI and my multi-focal symptoms he would be reluctant to jump to MS and suggested I see an Infectious Disease doctor and revisit a Lyme disease diagnosis. And so I did and so I eventually received a symptom based lyme diagnosis (my tests had been negative). With antibiotics and bedrest I eventually got back to my healthy self.

I left this last debacle with a foul taste in my mouth. I had seen so many doctors and tried so many prescriptions and gotten so wrapped up in wanting to know what was wrong that I feel like I don't even know what was symptom and what was side-effect and what was paranoia. But mostly I was healthy again and pushed it from my mind... until a month ago.

I noticed that I couldn't hear very well in my left ear and I was having some really intense ringing every few hours that would cause me to lose my train of thought. With experience with ear problems I expected some fluid had built up and I called up my ENT. But at the appointment, a hearing test revealed a slight hearing loss being caused by either my inner ear or the nerve. My ENT went with the inner ear theory and said it could be a mild form of menier's disease and prescribed a low salt diet and a diuretic. The ringing has since subsided, but my hearing loss is still there. I have a follow up in two weeks

I am trying to keep my wits about me, but I can't help but feel that there are just too many strange incidents piling up. I have heard "It really sounds like MS" so many times that its unsettling, but then I think this new bout of strange happenings could be a coming on of chronic lyme or maybe it really is an inner ear disease, or maybe, or maybe, ad nauseum.

I thank you for letting me ramble on and congratulate you if you got this far. Now my question is, is there anyone out there with a similar experience? Strange symptoms, years apart? No conclusive test results? How did you cope with your worries? How have you navigated the medical system?

Its been so hard to find someone who can sympathize without an over-arching diagnosis to explain my symptoms. But mostly I just want a witness to what is happening to me.

Any insight and commiseration is greatly appreciated.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 5/26/2010 5:56 PM (GMT -6)   
Wow.  Your story screams MS.  You must be very frustrated not to have any answers.  Most doctors won't diagnose MS without lesions.  You may well be stuck in the wait and watch nightmare (also called limboland).  I would definitely follow up with a lyme doctor and an infectious disease doctor. 
 
Honestly, I don't know how people cope with limbo.  I was "lucky" and diagnosed very quickly.   Navigating the medical world is so not fun.  You have to be your own advocate and be firm.  You have to keep saying, " this is not normal, there is something wrong. What do you think is causing me to feel this way?" and so on. 
 
It is not uncommon for an MSer to have gone for years before a diagnosis. Many have long histories of this that and the other seperated by years of relatively normal life.  Doctors and patients don't often connect things like ......"I was blind in one eye for a week in '02 then in '05 I lost all feeling in my left hand."  Those two things seem unconnected to most. 
 
So anyway......this was not an especially helpful answer.  I hope you can get some answers soon.  I am glad you posted.  Please let us know how you are doing during this process.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


apeter
New Member


Date Joined May 2010
Total Posts : 12
   Posted 5/27/2010 1:40 AM (GMT -6)   
Thanks for your reply Gretchen1!

The similarities to MS are pretty uncanny, but I can't help but wonder when doctors say it if they are just pulling at the mostly likely candidate for my symptoms given my demographic. Young scandinavian female with recurring neurological problems, its gotta be MS... oh wait, her MRI is squeaky clean.

And my quality of life is not bad at all, most of the time I don't even think about it. But just when I think I'm in the clear something else weird happens and I'm left with the potential for another goose chase. Right now all I can think is, my hearing isn't that bad... is it worth mentioning it just to end up being bounced around to different specialists, waiting months for appointments, stressing out my parents just to end up looking at another neurologist shrugging his shoulders, looking to pass me off to someone else.

And on top of that do I really want a diagnosis? What if I lose my job? Will I be able to get health insurance with a pre-existing condition? I mean, getting a diagnosis will probably cause more problems than it solves, right?

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 5/27/2010 7:06 AM (GMT -6)   
Yes you are right.  Sometimes the diagnosis does cause some real problems.  MS is a bad one to get since it is considered both incurable and progressive.  The treatments are incredibly expensive.  The med I take that tries to slow progression costs $ 2,800 each month.  There is another treatment that is upwards of $10,000 per month.  My insurance is good ( I pay a pretty penny for it as well ).
 
If you live in the US, the current policies are that pre-existing conditions can no longer cause you to be denied insurance.  However, the workplace is a different story.  Most choose to not tell their employer of such things.  It really depends upon if you have to request a reasonable accomodation.  I had to make such a request, and so it is no secret that I have MS at my workplace.  I am well supported as I do my job well.  If I couldn't do my job well, then that would be another problem. 
 
I am a bit like you.  I am very high functioning.  I do deal with symptoms and issues everyday but for the most part I live without limits. 
 
You have brought up excellent points here.  What you decide to do will be up to you.  There are meds out there that will slow MS down if it is indeed what you have.  It is thought that the sooner you get on a med therapy the better your chances of holding off major disibility.  That is a controversy in itself. 
 
I am glad you are posting.  Welcome to healingwell.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 5/29/2010 6:02 AM (GMT -6)   

Hi!

I am visiting from the lupus forum, my limbo ended with a pretty quick diagnosis, compared to most. I see a neuro who actually speculated I might have lupus AND ms, without lesions, rare but possible......but needed a spinal tap to confirm. Since it wouldn't have changed my treatment, I put THAT off.  Now, 4 yrs. later, I am too sick and too exhausted to work. I just resigned and am applying for permanent disablity. Back to neuro, donated quarts more blood for the lab's pet vampire bats.... oops, I meant lab TESTS! tongue   and he is doing a new one, ..antiacetylcholine receptor antibodies, which is a test for myasthenia gravis. He concurred that my neuro testing is consistant with CNS lupus, but my extreme muscle weakness abit unusual. And, he suggests I add methotrexate or cellcept? to my prednisone. I am going for a bone density scan on Tues. and then back to my rheumy. I feel so blessed to have good insurance and be able to retire with at least a small monthly check. When I read these posts I went WOW! so much like me it's uncanny and reassuring. I'm not crazy, or imagining things....My vision, impaired hearing and pain in my rt. ear, ataxia, I keep falling and walk like I'm drunk, failed my "field sobriety" test in the dr's. office, numbness and tingling in my arms and legs. I didn't give up, I KNEW something was wrong with me. I see 5 drs. now, GYN, PCP, rheumy, neuro, NP and accupuncturist. And I am so grateful for the Healingwell forum. If I could live on 40mg of Prednisone every day I would be fine. At least it is summer and I won't be so cold...

hugs,

suetoo


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


chelylynne
New Member


Date Joined Jun 2010
Total Posts : 2
   Posted 6/6/2010 5:16 PM (GMT -6)   
Hi..I went 16 years having minor and major issues. I kept hearing I'm young and healthy..it's just a fluke thing. Wow it looks like ms but your scan is clean so it's not. Probably 10 different doctors told me I was fine....it was depression, it was fibro.. I would bring up my past history too and just got dismissed. I finally ended up in the hospital very sick...finally a diagnosis. Good luck...you are so young. Don't let them miss the forest for the trees..

apeter
New Member


Date Joined May 2010
Total Posts : 12
   Posted 6/13/2010 5:41 PM (GMT -6)   
suetoo,
thank you so much for your post! I know what you mean, that its reassuring to hear of someone with similar issues. Best of luck with your team of drs.

chelylynne,
Thank you for the advice. I will keep plugging, or at least as much as I can with a clean MRI. I know I won't let the drs push me around anymore. I have learned so much this past year. I am just trying to live my life and stay as healthy and happy as possible so if/when something does come up again I can be ready to fight!



Update on my condition:

I have my follow up with my ENT on Friday and I was ready to tell him that all of my ear problems seem to have cleared up. No more ringing and no more hearing loss... In my left ear anyway.... Now my right ear has been acting up for a couple of days. I just hope that its a little bit of fluid or something minor, we shall see.

If its not, is it normal with MS for symptoms to switch sides like this?

apeter
New Member


Date Joined May 2010
Total Posts : 12
   Posted 6/16/2010 10:15 PM (GMT -6)   
Ok guys, really.

Now the whole right side of my face is numb in addition to hearing loss and ringing in my right ear.

Is it typical for MS symptoms to switch sides of the body like this?
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