Doctor thinks I'm "high strung"

[ccorina]

I am currently having many, many symptoms of MS.  My doctor has diagnosed me with fibromyalgia since all the blood work came back fine and a negative CT.  He has not ruled out MS, but has referred me to a MS clinic which will take awhile to get into.

At my last meeting, I told (and my husband as well as he comes with me) him I was getting worse, lots of pain, fatigue, etc.  Also, I just had my eye doctor tell me I have an eye muscle imbalance which wasn't there before.  Probably caused by whatever is going on.  (so that's REAL!)

I also asked the doctor if we could get xrays and virus testing to rule out those kind of things.

he said it wouldn't matter because he's sure there's nothing there!  He said he thinks I'm just too high strung!!

I could have screamed!  I cried actually...which my husband said was bad because it just makes me look like a dumb women with hysterics.

I can't work, I can't walk up stairs, I can't shop, I can barely stay awake and my doctor thinks I'm crazy!  Is this common?  I can't switch doctors.  I live in a town with very few doctors and none taking new patients.

I have seen a neurologist who was also very condescending.  Told me I have migraines (which I do no shock there)!  Didn't even examine me other than shining a pen light in my eyes.   Didn't even discuss any of my neurological symptoms such as numbness, tingling, weakness, etc.  I didn't stick up for myself becuase I thought maybe he would just wait for that til after the CT scan.  But he sent a note to my GP saying everything was fine i jus thave migraines!

Anyone experience these frustrations?  I can't get disability from my work becuase I have no PROOF.  And I  might never have proof.

Thanks for listening,

Corina

[ccorina]

Thanks for all the comments.  I feel more normal now :)

If only the doctors and insurance companies would understand how much we DON'T need anymore stress!

Corina

[Ndobbins]

Yeah, welcome to the club. Been there & still doing it. New symptoms recently for me & I know the neuro will just dismiss them.

Don't give up!

Nancy

[jumpinjiminy]

High strung - -

I just had a really good conversation with my therapist about this cog fog thing. It's been a real struggle lately to sustain attention and function which causes me more stress and anxiety. Add to that the feeling that when it's happening I get this idea parts of my brain are under attack, and well, that thought is just really scary and anxiety provoking. It all adds up, and can get overwhelming from time to time.

So now you have a physical assault somewhere that may or may not be CNS centered, but it is a physical illness and stressor no less. Then the emotional and physical stress of having to function with less resources available, add to that the emotional stress of having an undiagnosed illness and being expected to function like the rest of the healthy world.

Triple whammy. Right? It's tiring. And, well, stressful.

She explained that when your body is under stress, whether it be physical or emotional, there is a physiological change that takes place within the brain causing you to lose executive function - prefrontal cortex, or something like that, while the limbic and other more emotional areas of the brain take over - sort of a hijacking she called it.

It made so much sense, and boy, I felt a lot better knowing this is a normal process of having any illness or stress and not necessarily a sign parts of my brain are under attack and disappearing.

How to solve this problem? Good question. I'm still working on that one. But for the time being, knowing that stress is obviously a trigger for autoimmune disease and disease in general, I'm making a concerted effort to focus on working in some healthier habits this year starting from the ground up. Yoga, self-hypnosis, plenty of water, lymphatic drainage massage, Cymbalta, Xanax, therapy and good nutrition are the things I can control. They all help reduce the stress load on the body and mind, and are now becoming essential parts of getting better and getting control.

The docs may not have any answers for me for a long time. But in the meantime, there are things I can do to slow things down and get healthier. Every little bit helps, and when I communicate that I've got these things under control, then they can help me better with the remaining symptoms and problems from the medicine bag if need be.

I hope you find your answers, and find someone who can guide you in the right direction toward wellness. But for now, stress is your enemy, and whatever you can do to get control over it is only going to help, not just now, but in the long run.

[COBOB]

Keep in mind, it is near to impossible to diagnose MS from a CT Scan.   You have to have an MRI.  And your doctor is a little on the naive side:  People with neurologic symptoms effecting their live and no diagnose are prone to being high strung.  

[sadie405]

Doesn't matter how many times I hear this same old story-- I get so angry, on all of our behalfs. Hang in there and hopefully the MS clinic will treat you with the dignity and respect you deserve, and help you find some answers.

Best,
Sadie

[summerluvr]

I hate that.  Of course you have anxiety (or high strung, stress, whatever) you are living with life altering symptoms and not getting any treatment!  But it's a matter of proving the symptoms came first and cause the other stress.  

[meg321]

I just read your post again and I saw that you have been referred to an MS clinic..thats good

meg

[ccorina]

Thanks for listening!  I think that would make all the difference in the world - if we could get doctors to actually listen.

About the big city....my husband is currently looking for new jobs in the city because he believes I won't get good care until I move to the city.  But the specialists I see ARE in the city.  I guess if I live there I could just keeping going to new ones.  My town doesn't have any specialists so all referrals are at least 200 km away.

I really am glad I found this forum and hear people say the same things I am going through.  Makes you feel a little less crazy.

Corina

[meg321]

Hi Corina,

Oh yes, I am also in a small town, and have been thru every Dr here I think.  I had a fantastic Dr. and he took his practice elsewhere.  But I do have a good primary here now.

I was finally sent to UCSF which is 3 hrs from me but worth the trip.I went to an MS specialist and I love her, but she is busy.  I was going to say get a new Dr.  and if there is another larger city closeby, it would be worth going there.

Be proactive and you can get into one of those other Dr's office.. ignore the "not taking new patients".  

That is just wrong to treat you like that, I know how that feels believe me..it  makes my blood boil.

Good luck, and keep us posted..

hugs, meg

[Sumanadevii]

Ahhh yes.  The high strung, the anxiety filled, the depressed, the stressed!!!  We hear those words over and over on our boards.  It is a label given when a neuro doesn't want to take the time to LISTEN to the patient.  I had MS for eight years before being given a diagnose.  Could I get disability on a pinched nerve in my neck?  I couldn't walk.  My bladder failed over and over.  Fatigue was a word I didn't know.  I just knew I couldn't keep up.

I live in a small town too.  Very few doctors to choose from.  My sons begged me for years to go into the big city to a large medical center.  I refused thinking the care could not be much different.  Well, guess what?  It was different alright.  I was diagnosed in two days and day three was in treatment.  Get out of that small town and drive as far needed to a good facility.  

SSDI was given within two and a half months of our applying but NO you can't ask for disability when the doctors are telling you there is nothing wrong.

Get moving and don't give into their b s.

[jumpinjiminy]

Wow. It is so frustrating to be suffering and get waved off as a hysterical female hypochondriac. It sounds like your doc suspects MS even with a clear CT scan and cares enough to make the referral. That is a good sign he wants more information from specialists, despite his other comments. Sometimes I wonder if they say these things to try and reassure the patients not to worry so much and it just comes out horribly wrong.

But I know exactly how you feel and have gone through it for years myself. You know what they say about having to kiss a lot of frogs before finding the princes, right? That's been my experience with docs for 20 years. Insurance changes, docs move out of state or move on to a specialty, you get referred, clinics drop insurance plans . . . it's so hard to find a good doc and when you do, they don't always stay.

I'm not aware of your situation, location or insurance availability, but it might be worth a drive to find a more responsive neurologist for a second opinion. Some insurance plans don't require a referral from a PCP to be seen. If yours doesn't require a referral, there is no harm in calling one up yourself and scheduling a second opinion.

There is a gal who contacted me recently and shared that she drives 180 miles to see a rheumatologist because hers passed away. I thought that was really something. But she has a rare condition and lives in the boonies. It is something she must do to take care of herself.

Many cyber hugs coming your way. Maybe you could ask your PCP for a little xanax or Cymbalta to help with the "high strungness" and get that off the table. Sometimes, you have to play their game and eliminate possibilities one by one until they see the problem for what it is.