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5466288 tn?1410485185

Common MS Misconceptions

Quixotic1 is truly hilarious and yet,ironically so accurate in portraying neurologists in the thread about MS Lies! I really needed to read that thread today as my neuro appt is tomorrow morning.The laughter was good for me as it distracted me a little from the pain (oh that's a myth!) My eyes did finally get the 'better of me' despite me trying to push myself onward to read all the posts.

I particularly noted a post from a woman;twinklee1.She wasn't diagnosed until she was in her late 60's....but she had had MS for 20 yrs! I have been seeing neurologists since around 2000 and I think the problem is that they are neurologists that specialize in epilepsy.Neuro #1 wanted to blame everything on migraines or else the epilepsy. (I loved the way Quix brought out that having one neurologic disease doesn't "protect" us from getting another).He did neuro exams regularly which was good,but he relied on the outcomes too heavily.(Why is it that symptoms let up on days we have appts?! ) Often his comment on the paperwork would be "Healthy female,age__etc."  Well,fantastic! So,I'm not ready for the undertakers yet......but all I have is a headache?!!!  (zip the mouth!)

Neuro # 2 (presently treating me) It perturbed me from the beginning that he seemed to just "run patients through"...."any new symptoms since I last saw you?"  "need a refill?"  "see you in 6 monthes". Although I have to be honest and say in the past 1 1/2 yr he has been more attentive,spending more time,asking more questions and doing a few tests.We'll see how he does tomorrow.

PS I'm still laughing at the thought of  gray (or red)  slimy brains in the hallway!!! :)
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710547 tn?1295446030
I have been busy (yea!) and not on here for a while, but was recently in the hospital for severe Restless Limb in Arms and Legs - so bad, I couldln't stand it.  I was in agony, and unable to lie still, due to having to contract every muscle in my body continually.  I had to take so many muscle relaxants, xanax, and my pain meds to even get to a level where I could tolerate things, it was out of control.  So, my doctor put me in the hospital.  I only wanted labs, but when I got to the hospital, although my labs were abnormal (as usual), there wasn't a good explanation for the symptoms.  I had "MS Exacerbation" written as the reason for the admit.

Well, reading the letter consult, it said that since the symptoms were rapid onset (which they weren't, but that's beside the point) - he didn't think it was MS related.  Now, this is my internist, who is wonderful - I love him and have been with him over 30 years, and he's trying to manage all my diseases and knows nothing about MS, admittedly.  And HE is saying - rapid onset of symptoms is not characteristic of MS?  I had to laugh, as it certainly is.  Duration of symptoms, and type of symptoms - but rapid onset?  I couldn't figure out where he pulled that one from??

BTW, my doctor is quitting.  He can't take the political mess that is going on, and he's been suffering a while now from frustration, but really loves practicing and patient care, but can't care for them the way he wants.  He's told what to do by the government, and soon, the IRS???  Anyway - I don't know what I'm going to do come September when he leaves.  We both cried!!

After he told me, he stood up and leaned against the sink and started crying and reached for kleenex.  He and I have been through a lot together and it is hard to say goodbye.  I'll have his e-mail, but I won't have his caring and loving desire to help me.  Anyway - thought I'd insert that since he's the one I'm laughing at - ironic.

So few doctors understand MS - it's just so complex.  Add to that my history of having 30+ diagnosed diseases, and its no wonder no one can figure me out.  I've been in the hospital twice in the last few months, but and trying to string together some decent times.  My Systemic Sclerosis is marching on and destroying my heart, Biliary tract, pancreas, lungs, and GI tract.  I'm truly getting scared I won't last very long.  But I'm hanging in there and hoping things slow down.  We'll see, and I'll try to post more often.  I love catching up with you all.

Blessings to you all, and remember that there are so many out here and out there, who are doing so much worse - I know it is a cliche that doesn't help much, but once when I was headed into talk to my doctor about not being able to handle the burning and itching in my feet from erythromelalgia, I walked out of his office, and there was a woman in a wheelchair with no feet.  God was talking to me!!  I was humbled.  (My feet still made me want to consider amputation, but you get the drift).

The frustration of dealing with the medical profession when you're truly in agony and don't know where to turn, is real.  It is very hard to take when you're not taken seriously, or your symptoms are brushed aside or belittled.  Trust me, I know.  It is enough to cause much screaming and gnashing of teeth.  But, something has to help us get through the day, and past that awful feeling of being alone and misunderstood - not to mention un-cared for.  Remembering that we're not alone is important - but so is remembering that others are suffering worse fates.  It humbles us and puts things in perspective.  I've had to search wide to find those worse off - but they are there - plenty of them.  So, I pray for those who don't have support, and those whose pain finds not even momentary relief.  That helps me take my mind off my own suffering even if for a moment.

Sorry - didn't mean to launch into that - I guess I never know where my thoughts will take me.  Take care, and I'll post a more concise update soon.

Blessings, Jan
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5466288 tn?1410485185
Thanks for putting all of that into a health page Lulu! Once I get a new printer,I'll print it out! :)
Helpful - 0
1337734 tn?1336234591
That was both LOL and so very true!!! I am actually in the process of beginning to change neurologists because the one I am presently seeing has committed most of the lies Quix refers to......ugh!

Thanks for reporting this :)

Deb
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Avatar universal
I just re-read the list of lies my nuero told me.  It is so funny! I have been told 99% of those things by various doctors.  What happened to Quix?  I miss all the insite her posts brought to this forum. Thanks for putting those posts together Lulu.
Helpful - 0
572651 tn?1530999357
A while back I cleaned up that thread and put it together into a health page -everyone should read Lies My Neuro Told ME for the laughs if nothing else.  Thanks for mentioning this classic Quix piece!

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Lies-My-Neuro-Told-Me/show/1265?cid=36
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Avatar universal
wow, I truly appreciate my neuro now.  I make a list of what bothers me, prescriptions I want refilled or new ones I want.  He does some routine neuro tests to see if I have any new weakness, okays my scripts, ask how things are going, will talk about anything I want and then I'm gone for 6 months.  

True I have to wait sometimes about an hour and a half to see him, but he gives me his full attention when he's there.  

Granted he was neuro #4 after 3 idiots!
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