MY Long Drawn Out MS Saga! Anyone Else Experience This?

[puglover]

I just wanted to know if anyone else out there went through the same thing as I did before they were diagnosed with ms. It took years for me to get a diagnoses and be put on meds. I think that when I was first diagnosed I was more angry that it took so long,rather than upset that I had a horrible disease.


This all started about 20 years ago. I went to a chiropractor for a back ache. He noticed that i had spasticity in my legs and sent me to a doctor who he knew. This doctor thought something else was going on and sent me for an mri of the brain. The mri came back that i had plaques on the brain. I was then sent to a neurologist at a teaching hospital who said the plaques were nothing and that I had conversion disorder. Conversion disorder is a mental disorder where you unknowingly make mental pain into physical pain.the original doctor din't think so and sent me to a physichiatrist to rule out conversion disorder. It was ruled out by the pshychiatrist.

Several years go by with more and more disability. See 3 more neuros 2 said din't know and 1 said again conversion disorder. During this time saw several more pshychiatrist all said no conversion disorder but I did beleive it was all in my head.

Thirteen years ago wake up and can't see out of one eye. I had a new family doctor at this time because the other moved to another state. Sent me to an eye doctor said that it was optic neuritis. Did iv steroids and it helped. Sent to a new neurologist who has treated me for past 12 years. I have had optic neuritis in 11 times. Vision is now poor because of it. Every time I was sick neurologist would do iv steroids.. kept sying that you don't have ms but I don't know what you have. I kept going to this doctor because at least he recognized that there was something physically wrong and would treat it with steroids.

Two years ago found out I had cancer. Treated with surgery, chemo and radiation. I'm in remission now. Then 1 year ago got sick again with pericarditis. I was sick for months with this. Then in june of 2012 woke up and couldnt get out of bed because I was so dizzy. Finally went to er after 2 days of lying in bed. I thought that it was the pericarditis again. The neuro on call came in and saw me and said this is definetly ms. Was admitted my regular neuro came in said not ms. Was sent home and told to go to neuro who was on call. I saw his partner and this neuro said you have ms. I asked him how he knew said that looked at old mri's and lp from years ago and all of the test should ms. I was shocked that all of this tiome I had positive test and was told that it was all in my head.

This new neuro put me on copaxone and i am doing well. I just don't understand why it takes so long to get diagnosed. Why are so many neuros so resisent to diagnose ms? If it walks like a duck, sounds like a duck isn't a duck!

[Whimpurr]

Bless your heart! Unfortunately many of us have been in "limbo-land" for years as well. I am relatively new to all of this and still waiting to get out of limbo myself, so I am sure others here will have more to say to you!

So happy that you are also in remission from your cancer!

[lstrl]

Wow. What I don't understand is if they saw lesions in the brain years ago, why would they just assume you had conversion disorder when there is evidence of something going on? If it were all mental, I would think they wouldn't have seen a thing.

My first brain MRI showed some spots that the radiologist suggested could possibly be MS before I ever started showing actual MS symptoms. My neuro at the time said it was nothing. Two to three years later, I've got MS symptoms and the next two neuros also said it was nothing. That time span is nothing compared to yours, but I can't help but wonder if those spots were an indication of what was about to come but every dr assumed it was nothing. I've felt more anger than anything as well because I had so many other signs just like you that pointed to MS, but nobody took me seriously.

I'm glad to hear that you're doing well now. After everything you've been through, hopefully you'll now have better times since you've got your answer and have started treatment.

[Jason87]

I can't help but feel insurance companies play a big role in this. MS is expensive.

[baydenoc]

Balance

Just wondering if balance ever improves?

[MSW1963]

Sorry for this rant, but your post brought up some old memories.

puglover, it continues to amaze me that patients are put through this really harsh and harmful process for a MS dx.

I suspect too, that it's in part due to the current managed care=cost control in our health care system.

I was first treated by the MS Guru, top university hospital, Italian trained neuro, Chairman of the NMSS. He refused to dx me, explained the harm a ms dx would do to my life, uninsurable, expensive meds, etc. Turns out, my MRI results alone made me uninsurable, even without a formal dx ever. Refusing a MS dx is no substitute for available MS treatment either.

I was dx'ed almost 12 yrs ago, had MS sx's for decades before my dx. I didn't even have an idea what MS at that time, other than a vague 'the great crippler of young adults' reference.

I remember someone posting about a doc dx'ing Conversion Disorder, how extremely rare it is, out of one side of his mouth, then bragging about dozens of cases he dx'd in the past 12 months alone, out the other side of his mouth.

It's either one or the other, can't be both extremely rare when you're diagnoising dozens of cases every year. Of course his amazing skill as one of very few distinguished docs qualified to recognize Conversion disorder, the only logical explanation.

It does take a doc with a lot of skill and confidence to diagnoise MS. Too many docs don't have either the skill or confidence, but will 'milk' any patient willing to continue seeing them and pay the bill on time, while doc meets managed care cost control quotas. Now that's a win win proposition for any doc lacking not only skill, confidence, but anything resembeling ethical standards.

For me and I'm sure for many others too, there was nothing more harmful than being told I did not have MS, that my sx's were mental health related, hysterical female, etc., for years.

Glad you found a doc. I found a similar doc. Quote from my MS doc who reinstated my dx after it was reversed 5yrs post Copaxone treatment, following a relocation, "If not ms, what else do they think it could possibly be?"

I had MRIs with too many to count brain lesions over 10yrs, with clinical exams, medical records, etc., when I relocated and had a doc reverse my MS dx. I heard that song and dance before and it all sounded frieghtingly familiar, until I found a MS clinic and my new MS Specialist doc. Rant over.