Underdiagnosed?

[Carrie Lynn]

Newly diagnosed, looking back have had problems for years, but doctor did not put it together (nor did I).
Time loss daily (absence seizures), 'jerking' and throwing objects in classroom and at home (myoclonic, tonic/clonic) and a few episodes of atonic drop causing broken bones. I reported all this over a period of 7 years, with thighs hurting every morning like I rode a bicycle all night. I finally listed all my symptoms, from speech problems, numbness, jerking etc, and used WebMD to suggest only 2 possiblities: MS or epilepsy. Is this lack of diagnosis common? How do I get proper dx in my files? Sometimes I fall to ground with 1,000s of electric shocks to my feet. Is this part of epilepsy?

I quit teaching and am fighting to get disability. I am on Dilantin, Baclofen and blood pressure meds.

 

[julie wishes]

What the heck. How frustrating. Why don't you straight up ask for a neurological referral. Don't wait for the Doc to figure it out. Go with your gut and keep asking until you get what you need. I'm sorry you have been dealing with this for so long. What a bummer. And how disappointing to hear there are MDs missing the clues. I hope you find some good advice here to help lead you down your new path.

 

[Silat]

That... sounds more like MS to me... but of course I don't have access to all your information, just the description you provided.

Multiple Sclerosis, as the name implies, causes multiple lesions (Sclerosi)(That may be mis-spelled...) in the brain and along the spinal cord. Depending on where these lesions are in the brain, this can, in some cases, lead to seizures and seizure-like symptoms. A lesion in the motor-cortex of the brain can cause the jerking symptoms, whereas with Epilepsy these same symptoms are caused by abnormal electrical activity. Two very different causes having identical effects.

The best thing you can do is to compile a list of every symptom you can think of since they began, preferably in the order you began having them. Take this list to a Neurologist, if you have one, and explain to them you feel it's either one or the other.

What they should do is give you an MRI. If they don't, insist on one, and if they refuse, find a new doctor. An MRI will show lesions in the brain and on the spinal cord, so if they show up, the diagnosis is MS. If there are no lesions, the diagnosis is Epilepsy and they'll have to give you an EEG to find out where the abnormal activity is stemming from, then they'll be able to properly diagnose and treat you.

Simplest and most effecient way to go about it, in my opinion!

 

[Carrie Lynn]

I did get a referral to a neuro. His office called for a video EEG appt for me.
No reponse. I called hospital myself, and they won't do it for 'self pay' patients with no insurance. Called neuro office repeatedly, left messages. No response. Guess he does not need me as patient. Back to primary care physician only. Frustrating. At least I now have some meds to help, but still having seizures daily. Facing a 'hearing' with vocational expert for Social Security Disabl. office, guess 'she' can tell me what work I can do. Can't drive, can hardly write or walk, or talk. My speech is slurred after a few minutes on the phone, guess my brain is wore out. Feeling funny right now, guess more is coming.

 

[Silat]

Can your PC Physician schedule an MRI? How it would work is, he'd set you up for one, you'd have it done, and then he'd get the results and consult a neurologist himself/herself. It's a little more work on their part, but it's also part of their job.

Alternatively, you could try and get a referral to a different Neurology center. Sounds like that one is... well... a piece of crap. (I'm having a relative lack of clever words right now...)

 

[Carrie Lynn]

Thanks, I might do that. My PC did not like it when I went in with broken arm and asked for x-ray referral at local hospital. It cut out the ER visit cost. But I was right, elbow was broken, and with seizures the local ortho doctor refused to help me. (too risky for surgery with seizures), but a different doctor 100 miles away did new x-rays and sent me to physical therapy for 8 weeks. Moved the break into position and healed. Second opinions are often the best.

 

[DadofTwins]

You have to find a new PC. You need to think of yourself first and do what is best for you.

 

[Carrie Lynn]

My husband says the same, I just dread telling someone new all my history. It is long (I'm old) and sad (many missed diagnosis). How can you judge a 'new doctor'?
I don't have insurance and self pay rate is now $75.00 per visit, even just to get a prescription written. I wish they had doctor 'interviews' where we could talk to some before we get stuck paying.

 

[Silat]

Why do you have to tell them all of your history?
Could you not have your medical records transferred to the new place?
That's how it works where I'm from, if you get a new doctor you have your records transferred to them for review before your first visit. And then explain anything they have questions about in more detail when you show up for your first visit.

 

[MaryK]

It seems like your emergency room would see you at your local hospital or possibly is there a free clinic? Silat is right a PCP can order an MRI . You say you were recently diagnosed. Diagnosed with epilepsy or MS? I wonder if your Dilantin level should be checked.
Hope you find the help that you need.

 

[Westwind]

It does sound like you need to see a different doctor. I've had a lot of careless ones. GP's are not focused on chronic conditions, and don't go looking for them. And many just automatically ignore patients with a variety of symptoms it seems.

Going over your entire medical history all over again is daunting, but it's well worth it with a good doctor.