Tired of feeling dismissed

[Anaya-Amani]

It's been a while since I've posted but the "ms" like symptoms are back with a vengeance! Since my MRIs were clean I was dismissed as just Fibromyalgia, diagnosed August 2004.

This time last year I was having the hug sensation through my torso making it hard to breath & lightheaded; leg pain going up/down stairs, migraines, electrical shock feeling in my arms & tingles all over my body. Now not only do my legs hurt on stairs but just HURT like a constant Charlie horse in my calves, muscles twitches & spasms all over where I can actually watch my muscles jump, burning sensations in my hands/feet, lightening bolt/brain freeze like headaches, tremors esp. in my hands. I also feel extremely fatigued after running a few general errands; shaky/weak feeling in my body like I'm getting sick & I want to pass out.

I really don't want to go through the humiliation of bringing these symptoms up to my Drs. b/c I know I will be dismissed as fibro. I thought Drs were suppose to help you figure out what your health issues are but all they do is call it anxiety and fibro refill Rx & send me on my way. The other odd symptom is my cheeks ache like I've had dental work done & the numbing is wearing off, the area feels warm to touch & it turns red like a bruise & there is some swelling. The school nurse noticed it & said it wasn't normal & to see my dr but I just document the symptoms & keep going. Whatever is going on with me seems to be sucking the life out of me & I'm tired of hurting & not being heard!!!

I'm just not sure what to do next...

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Redwings]

Hi Anaya:

Many of us here have had the experience of being dismissed by doctors. But this:

I really don't want to go through the humiliation of bringing these symptoms up to my Drs. b/c I know I will be dismissed as fibro.

implies that you don't think that you're worth the trouble of going through the process of finding out what the problem is.

I have, more than once, put myself through humiliation because I wanted a specific outcome from a neurologist. It was awful at the time, but it's all in the past now. For me, the humiliation was worth it to get what I wanted. And as soon as I got what I wanted, I changed doctors.

It's all too easy to slip into the state where emotional comfort distorts the big picture. But emotions are just emotions. You don't have to believe every thought you have just because you have it. And you don't have to succumb to every emotion you have just because you feel it. If an emotion isn't serving you, you can discard it the same way you throw out junk mail.

By allowing yourself to feel humiliated because particular medical visits aren't emotionally comfortable, you're depriving yourself of getting what you want, which is a proper diagnosis and treatment. Although a doctor's dismissive attitude seems personal, it isn't. And taking it personally only distracts you from getting what you want.

People get what they fill their minds with and put their attention on. If a doctor dismisses you, you can acknowledge it for what it is, then be angry and/or sad about it for awhile, then dismiss it and move on to another doctor. Many of us here went through several doctors of several specialties before finding good, competent doctors we "clicked" with.

Although I came to him mostly by accident, my neuro-ophthalmologist is like the Yoyo Ma of neuro-ophths. To get to him, I had to go through several unqualified neurologists and ophthalmologists and a lot of frustration and humiliation. But I kept going, and eventually fate brought me to him. I didn't let emotional discomfort stop me, and many other posters here didn't let it stop them, either.

You're not in control of what thoughts and emotions come to you, but you're absolutely in control of how you react to them and what you do about them. You can get caught up in them or you can move past them.

What good is being done by focusing on fear and humiliation and all the things that you can't do? What good is being done by making your emotions more important than your actions? What good can be done by focusing on what you do want and moving past the negativity and unproductive emotions? Keep your eyes on the prize!

Finally, I don't want to let this go:

The other odd symptom is my cheeks ache like I've had dental work done & the numbing is wearing off, the area feels warm to touch & it turns red like a bruise & there is some swelling.

MS is a disease of the central nervous system. It doesn't cause warmth and redness of the outer body or skin. That's a different problem and should be worked up as its own problem. If the problem is obvious enough for your school nurse to notice, then there's a good chance a doctor will notice it, too. You can start with your primary care physician.

You're tired of not being heard, but you can't possibly be heard if you don't put yourself in a position where you can be heard. Keeping your symptoms quiet isn't going to get you heard. Plugging through, reaching out even though you're emotionally uncomfortable can.

Again, you don't have to be a hapless victim of your own emotions. You're in control of what you do in spite of them. Please keep focusing on what you want to achieve and keep going!

[Maxx]

Redwings...

...You are a credit to msworld. Well spoken, albeit via the written word.

[Anaya-Amani]

Hi Redwings-
It's not that I don't feel worth finding out but more that the Drs. I've seen seem to tune me out when I bring new symptoms up. I'm not sure if its b/c they don't believe me or if its b/c of my insurance limiting their investigation.
Earlier this year I had the small nerve biopsy & my insurance initially approved the procedure then a couple weeks later I got a letter saying they rescinded their approval & wanted their money back!
I had all of my symptoms typed out & gave it to the Drs. and he ran blood work, MRIs & EMG but everything was fine. The rheumatologist also told me some of my symptoms were anxiety.
It's time for my check up with the rheumatologist & I'll print out everything I've documented & see what he says. If he dismisses me again I'll try and find another MS specialist.
I do want answers! It's just frustrating when you feel something isn't right with your health but the Dr. says its just fibro & we really don't understand it & all of its symptoms.

[Anaya-Amani]

I've decided I'm going to try a new dr, a MS Specialist that was recommended on another forum. I will make an appt with my GP and get the referral that I need. The headaches (migraines) and fatigue are sucking the life right out of me and I need some relief.

[unsureofanything]

actually, not sure, but i wouldn't ignore as non MS...

the symptom described

Originally Posted by Anaya-Amani
The other odd symptom is my cheeks ache like I've had dental work done & the numbing is wearing off, the area feels warm to touch & it turns red like a bruise & there is some swelling.

may be neurological as well. and it is said that MS is an autoimmune disease. swelling is caused by the immune system and inflammation definitely is a related issue BUT CHECK THAT WITH A DOCTOR.

it might be the facial or trigeminal nerve. ie a symptom of a variation of bells like plasy or trigeminal neuralgia, which may be part of MS, exist on their own or be part of a seperate syndrome perhaps even the fibro. or even caused a separete thing entirely, like an infection or something. either way it is important don't ignore it....see your doctor now

and everything else redwings said to me made sense.

i too avoided things due to fear of humiliation. that was a big mistake. redwings speaks the truth. don't ignore it and speak up. you are worth it.

[Kalliope]

I think you know your worth all the time, trouble and humilation that your going through to get the answers you need. It gets old going to doctor after doctor and being dismissed because you don't completely fit the mold of one disease or another.

Not once did I ever feel that I wasn't important enough to keep repeating my symptoms and frustration of what I was/am going through to get the help I need, but I can sure say I got tired of having to do it.

Keep trying. Eventually someone will help you put the puzzle together. I hope you find the help you need to feel the best you can.