Beyond Frustrated!!!!!

[idlesongbird]

A month ago I started my 4th episode in 5 years of one sided muscle weakness, debilitating fatigue, numbness, tingling, burning and inability to find words. I had an mri's in 2008 and 2009. I was told it was normal in 2008 but the neuro told me the next year that my lesions were stable. I asked what they were from and he said probably migraines. The first 2 episodes lasted 3 months each and the 3rd only a week. The first two episodes were blamed on probable cervical stenosis and the last was anxiety and fibromyalgia.

A month ago my 4th episode began with burning in left shoulder and arm and left thigh. By the third day I could not bear weight on my left leg due to knee buckling and started having urinary urgency with difficulty starting to urinate and constipation. My PCP sent me for an mri with and without contrast and for an emg and neuro consult. My MRI was completed Monday and an appointment for a new neuro was made for June 5th.

I recieved a call today that they had a cancellation for today and I jumped on it....at least figuratively After an exam and and emg I was told my mri had one lesion and he would review the scan and be with me in a few minutes. He told me not to worry about the lesion cause it's normal to have one for every 10 years you're alive and I only had one. i asked about the previous reports and he gave no answer. He then proceeded to tell me all of this was due to stress because he had never seen anyone walk like I do and stress was the only possible answer.

I am feeling so frustrated right now cause I thought after 5 years maybe I was going to get an answer! My insurance will only cover dr's in the same hospital network, which also happens to be my employer. Oh and my insurance plan is half owned by my employer as well!

At this point I think my only option for answers is a neuro outside of network and out of my pocket. I'm looking into the ms center in the state that I live in tomorrow. Beyond that I don't know what else to do except have a good long cry and fall asleep

Just wanted to know if any you have dealt with similar things and how you get through those ruff times. Here's praying morning light brings a happier and brighter perspective.

Thanks for listening!!

[MSSINCE09]

Everything is so much more frustrating now. I have not dealt with what you are going through but I suspect you work for an HMO. If that is the case I highly suggest that you do find an out of network dr to get a second opinion. Then once you have an actual diagnosis your employer I mean physicians then have to treat you. I have found this with so many HMO companies the least they pay out the better the bonuses for the Medical Reviewer and the doctors that agreed to join the plan to begin with.

Now back to frustrating. I do not understand why it is that people that work in medical offices think they can talk to you any way they please. I feel like I have to put up with it just so I dont get discharged from a practice. I worked in the medical field for 15 plus years and did my best every day to do what I would want done in the event I got sick. Now look at my Karma how did that work out? LOL!

Wishing you a speedy diagnosis and less tears!

[idlesongbird]

Thanks for the reply! I'm actually a RN who has worked for 13+ years for a large hospital that owns the HMO and the Doctors. I hate to be conspiratorial but navigating this system leaves you paranoid sometimes I've been at this whole thing for 21 years since I was 16 and was told at 19 I had fibromyalgia which has made these new symptoms difficult to get answers for. It just provides the perfect catchall!! And I'm not nocking fibro cause it's real!

I used to take what they said with a smile and then walk out. But I can assure everyone in that office knew my displeasure. My mom always told me it's harder to keep your mouth shut when you're older and she's right.

As far as the karma thing.....well what you did for your patients was the right thing. I have always looked at those I treated the exact same way. I always see my mom or grandma or brother lying there and treat them accordingly. It's just so different now! Everything is about the bottom line. I learned that the hard way when i worked for an insurance company for 6 months. I just get the feeling it's more cost effective for the company for me not to get diagnosed and not get treated and end up on disability than it is to invest in a loyal employee. Sad state of affairs health care is. Not sure how much longer I can participate in the charade!

[JayEm]

That's so frustrating!

I was diagnosed with fibromyalgia back when all of this was first happening. For years, I thought I just had a very atypical case, because aside from fatigue and cognitive problems, most of my symptoms weren't the typical fibro ones: I don't have tender points, I don't have much pain. But tell a doctor you've got fibro, and they don't look for anything else.

"Double vision? Oh, sure, that can happen with fibro." "Numb spots all over, you say? Sure, that's fibro." Et cetera, et cetera. I've had some doctors where I bet I could go in with a missing limb, and they'd say, "Oh, that's common with fibromyalgia."

It's frustrating, particularly since the fibromyalgia diagnosis is real, but doctors who haven't kept up to date on the diagnostic criteria seem to use it as a catch-all for anything where they don't know the answer. Because heaven forbid they admit they don't know.

I hadn't considered the issue of trying to avoid giving a diagnosis that would require treatment. That is infuriating, but not unexpected.

I might consider paying out of pocket, if I thought I could find a doctor who would actually work with me to figure out what's going on. But I have been on disability for several years now, and it doesn't seem likely that I'll be able to go back to work any time soon, so I feel bad about spending my partner's money on something that might not work out (and even if it did, that probably wouldn't mean I could start working again).

I hope you can get some answers soon!

[Shashi]

I've been in limbo since 2006 when all of my weird neurological symptoms started. For years I had normal MRIs, then in 2010, I had an MRI that showed four or five lesions (depending on which doctor you talk to.) However, they are in the wrong place or the wrong shape or size or whatever. I even was diagnosed with optic neuritis last year. Even that didn't lead to a diagnosis of the neurological problems.

It can get very frustrating to know there's something wrong and not have any answers. But I've learned to just live life, enjoy every minute, and try to deal with the symptoms when they come as best I can with medications. I'm no longer seeking a diagnosis, and may never get back on that roller coaster, as long as I can manage my symptoms and they don't get any worse.

Right now I think I'm having a flare up, as my left hand and foot are numb and my right hand is hurting really badly with shooting nerve pains. It makes typing really difficult. This will probably go on for a week or so, then let up. At least these flare ups aren't has bad as they used to be since I started taking Vitamin D3 and got my levels back up. I also take alpha lipoic acid and acetyl L-carnitine for fatigue.

I hope you get some answers soon, or that you can learn to deal with whatever is going on. It's not easy, but sometimes you just have to live your life in spite of everything.

Hugs and prayers,

Lisa

[Mynamegoeshere1]

I have your same symptoms right now with no lesion. They are doing steroid treatments and I was Leary as I have no new lesions, but today is my 3rd day and I'm walking better again. Not normal, but can bear weight on my left side again. I'm still very weak, but at least I can walk again. I wish you lots of luck.

[MSSINCE09]

Had a great experience at my PCP's office today. Everyone was so cheerfull and happy. The assistant told me they love when I come in because I just go with the flow! So its not every experience just sometimes. Thanks for reminding me to think of the good Karma that does come my way.

[idlesongbird]

Thank you all for sharing. It's comforting in a way to hear that others are going through the same thing but yet I wish we could all get an answer!!

I made some calls and hopefully if my primary doctor gives me a referral I can see a ms specialist. The consultation will be at my expense but at this point I don't care. I want to hear from someone who deals with this sort of thing. If he says no then I guess I will continue to live with it!

I don't understand why it is so hard to get an answer for what we are experiencing. But I'm not giving up and my prayer is that none of you do either.