Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
My last neurologist visit, I told her of the continuing numb spots on my face, mostly on the right side. They go up into my hair, into my mouth, and sometimes down my neck. Mostly it's my side of my head, my ear area and I can't feel anything there like wind from a fan, etc....
She said she had never heard of this in MS! WTH, really? I am SURE I've read about people on here having the same issues. She then asked me if I had ever been to a stroke clinic. And that my latest MRI didn't indicate any brain tumors.
What kind of docotor is she? She is supposed to be an MS specialist, why is she trying to point me in a different direction now? I've got classic symptoms of MS.
Why is it so hard to get a definate diagnosis of this disease? Should I be worrying about strokes and tumors now, like that's better than having MS?
Geez!
She said she had never heard of this in MS! WTH, really? I am SURE I've read about people on here having the same issues. She then asked me if I had ever been to a stroke clinic. And that my latest MRI didn't indicate any brain tumors.
What kind of docotor is she? She is supposed to be an MS specialist, why is she trying to point me in a different direction now? I've got classic symptoms of MS.
Why is it so hard to get a definate diagnosis of this disease? Should I be worrying about strokes and tumors now, like that's better than having MS?
Geez!
Just a thought: Do we want our docs to dx us with our chosen disease, or do we want them to find the correct dx for us?
Either you work with your doc to get to the bottom of things, or get a new doc. The first question you should ask is what is she leaning towards as your dx. Then ask, what makes you believe it's that.
Ask what she believes is the cause of your recent symptomes if the diagnosis isn't the one you were looking for.
As much of a bitch as being in limbo can be, it's to your benefit for the doc to be sure what's going on. Most any symptom can be caused be a multitude of things.
Of course we want the doc to find the right disease, but when a doctor shows signs of incompetence should, should we just continue offering blind faith in the white coat against our better judgment or should we make a conscious decision to do our own research and be our own advocates and perhaps look for a better doctor?
I have been having some minor loss of feeling on a spot on my scalp. I am pretty sure this is an MS symptom.
The thought behind that statement is a doc has to have clinical proof of the dx. Something to document. Without that, the chances are slim to none any insurance company would pay for MS therapy.
This isn't intended to be a political response, just the damn sad facts. The large insurance industry in America dictates how your doctor will treat you . . . he needs to be paid (as well as his whole staff, the hospital ect). So medical communities set guidelines for how a dx can be made. That's why MRIs, lab results, ect are used. They are the 'proof' that's required.
I worked in the lab for 30+ years, a large part of the work we did wasn't to monitor patients, it was to document the status of a patient. A lab result could mean the difference between whether ins would pay for another day in the hospital or not.
While I was in college, I worked in medical billing. One of my specialties was getting denied clams paid. You learn real quick what the insurance companies require to get a payment. 'Doc, I don't care if you think the patient is plaid or not. Without documentation, that patient is plain.'
Thus comes the bitch of being in limbo.
It's obvious, if the doc seems like a quack to you, go see another.
People have to learn to ask the doc questions as well. Docs are not the GREAT OZ. When a doc is looking towards a dx, ask what makes you think it might be that? Being a patient shouldn't be a passive sport as long as you're able to talk.
Someone posted an article on the main board at the very top of the page, in dicussions, that may be of help to Blueindy.
Dr. Orange posted 10 Symptoms you can't ignore, the first symptom you describe is relative and may cause her to investigate more "acute" possible causes. Everything isn't always MS even for people with diagnosed MS.
http://www.dailystrength.org/blog/366-10-symptoms-you-cant-ignore
There is no uncertainty when it comes to crushing substernal chest pain, severe abdominal pain or a fainting episode, get yourself to the ER or call 911. There are symptoms, however, that fall into a middle ground and you wonder: should I bother the doctor on call? As an Internal Medicine Doctor I am often surprised when patients tell me weeks later they suffered one of the following complaints and didn't seek help. New Year's Day or not, contact the on-call doctor or get an appointment soon if one of these symptoms pops up.
1) Numbness or weakness of one side of your body, especially when it involves the face. Make a distinction from the above symptoms occurring out of nowhere to your arm being asleep when you wake up, that is harmless. Even if the above symptoms are present for 5 minutes or less do not ignore this as it may be what we call a TIA or Transient Ischemic Attack. Think of this as a mini-stroke and many people ignore this because the symptoms resolve quickly. If you report these symptoms to your doctor he/she will likely order a carotid ultrasound, have you start an aspirin a day and may check a CT scan or MRI of your brain as well.
Why this worries me: Twenty percent of people who have a TIA will have a stroke within 90 days, and that's why we care.
Just as much as we may want a dx, most docs want to be sure they find the correct dx. MS is one of those nasty diseases that don't make that job easy for docs. Not every MRI, lumbar puncture, or any other test may tell him what he needs to know
I don't know this poster at all, this is just being thrown out there. Because we're frustrated, scared, anxious, we easily get emotional during our doctors visit. All this does it make it harder for the doc to talk to us, and find out what they need to know. This also doesn't help us really hear and understand what the doc tries to tell us.
Give this a thought, would you want the doc to just give you the dx so he could have a tidy chart, and you would have the dx? How would you then feel if a month from now if what you were really having were TIAs and had a major one?
This poster would do well to really sit down, talk with the doc, and listen. Then ask questions, what are you leaning towards for a dx, why?
Limbo is a bitch, I agree. Getting the wrong dx could be deadly.
Of course you should be patient and wait for the proper diagnosis instead of demanding an immediate diagnosis. There is nothing wrong with the doctor trying to rule out other options first, such as stroke, since there is no definitive test for MS (Spinal tap is not specific for MS) and the brain lesions can be caused by multiple other diseases. Its about process of elimination as other posters above me have pointed out, and those symptoms could have multiple causes.
But I wouldnt dismiss the original posters by saying "You must have got it wrong or misunderstood him". Doctors often surprise me with their ignorance. They are definitely not OZ.
I guess what I was getting at was how my neuro 'dismissed' my symptom like she did. I've already been told by her that I may just be a mild case anyways, but that still doesn't give her a reason to write off a new and troubling problem as "I've never heard of that before".
It bothered me also that she said this in front of my husband who doesn't understand MS and won't read anything about it. My symptoms are kept to mainly myself since he really doesn't understand and seem to care. She just sort of confirmed to him that what I have is nothing.
Mind you it doesn't hurt or effect my daily life so I didn't push it, I only wanted her to know I am aware of something new.
I was equally brushed off by my family doctor when I called and said I had new numbness and tingling on the opposite side of my body as the last attack (right leg and foot this time) . His nurse said there was no reason to see me as there was nothing they could do for me.
Maybe this 'can't help you attitude' is more prevalent in Canada where the health care is free and overburdened?
My neuro told me of some of her patients that are wheelchair bound, using walkers etc...okay I get it I'm not as bad off as I could possibly be, I am extremely and daily grateful for that but please....don't patronize me by lessening my symptoms. All of us are only a day away from what could be a major and debilitating attack, any time. I wasn't looking for a definate diagnosis from her, just for someone to listen to my strange body signals, I guess.
It's scary whatever is happening to me, be it MS, TIA's, or tumors.
And it's darn hard to get another doctor here, they are few and far between. She is the closest specialist too, which is sad. Almost all of my questions and concerns are answered here on this board, maybe I should point it out to her, she could learn a few things. :(