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My Herstory

Aug 10, 2008 - 7 comments

I told someone I'd post this.  Please do not feel compelled to read it, as most of you know my history, or, 'her story.'

I have always considered myself a 'glass half-full' person.  I am a 44 yr. old mother of five boys, married to a man who is a workaholic, who has, in the past few years needed to travel during the week for his job, returning home usually only on the weekends.

Despite my family history of nearly every health condition: early heart disease, diabetes, hypertension, breast cancer, Crohn's disease, and melanomas, I have been in perfect health until the age of 41, when I began having migraine headaches, having never had them before in my life. (two of my brothers have them, and now my 15 year old son has them.)

The first time I had a migraine episode, I didn't have a headache, but a very strange 'aura,' a feeling of doom, followed by myoclonic jerking and what I now know is called ataxic gait.  I also could think my thought, but couldn't say them.  This lasted several hours.  My husband took me to the ER, and my diagnosis there was "myoclonic jerking." I was to follow up with a neurologist to have a full neuro exam.  The following day, I still felt 'spacey,' and was pretty freaked out.

I saw the neuro, Dr. W., my first of several, in 2005 and he examined me and asked me many, many questions.  He felt that I had experienced a 'complex migraine,' and prescribed me desipramine, which is an antidepressant.  My next neuro told me they don't even use that drug anymore.  They learned about it in Med school.  Another doc told me Dr. W. probably was just treating me for depression.  I WAS anxious on my first visit.  I was still freaked out over the lack of control I'd had over my body.

Dr. W. fell out of favor with me when he walked out of the room when I was trying to tell him about a scary episode I'd had that felt like what I thought was a seizure.  He told me I had to give my medication time to work, and walked right out of the room while I was speaking.  I got up and asked for my records.  (I did see a few abnormalities in an early VEP I had with him that he blamed on anxiety.  I have no idea what kind of abnormality it was.)
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On to Dr. Meds, Inc.  He was Head of Neurology and chairman of this board, and that, and gave me every test he could think of (think of billing my insurance company for) and prescribed every medication he could think of (which pharmaceuticals rep did he have in his pocket, I wondered?)  I stopped seeing him when I started sleep-walking on Ambien or Lunesta, I can't remember which, but I'm sure I tried both--probably before they were on the market!

When I was seeing him, I began to have tingling in my right foot.  Then complete numbness. He suspected MS, but it was hard for us to tell what was being caused by my body and what were side effects of the medications I was on.  I wanted off everything, NOW! My great internist helped me get off all the drugs I was on except Topamax, for migraines.  On to the next neuro.
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I'll skip to my World's Most Attentive Neuro, my favorite.  This is a loose copy of the timeline I gave him:

2002 -- Had severe episode of vertigo after the birth of my fifth child.  Couldn't walk on my own.  Stayed overnight in hospital.  Needed help caring for children for several weeks as vertigo resolved.

No symptoms for years

2005 -- Had 'complex migraine episode' with myoclonic jerking. (I described it above.) No headache

2006 -- Had another episode of ataxic gait, slurred speech.  Lasted overnight.  

2007--March

Started to feel weak and tired.  I needed to use a stool in the morning to sit down to dry my hair to get ready for work.  I thought I had a virus, or the flu.  Internist did blood work up.  All normal.  

Was feeling progressively weaker and more fatigued.

May 2007

At my son's baseball game, while walking out to the field, I had to sit down in the grass, or I thought I'd fall down.  My thighs burned.  I rested for a half hour and made it to the stands.

THREE DAYS LATER Had an acute episode where I couldn't walk.  At work, it started with not being able to lift my toes.  I shuffled to walk.  My internist sent me to ER. Both legs were weak and I couldn't lift them off the gurney by the time I got to the ER.  This episode lasted all day and over night.  I shuffled for weeks.

My new neuro, Dr. S. agreed to see me the next day in his office.  He did the pinprick test, and I had no feeling at all up to just below my bra.  He tested me for Transverse Myelitis with MRIs with and without contrast, which vame out normal.  He did EMG/NCVs -- normal.  Once he had these tests back, he concluded that I needed to see a psychiatrist.  So, I saw a psychiatrist.  

The psychiatrist spoke with me at length and concluded that I DID have anxiety.  He felt that my anxiety was caused by my health issues, and not the other way around.  As we were speaking, he noticed a tremor in my right hand that I didn't realize I had.  He said he'd never seen a psychogenic tremor.  He was certain my health problems were organic, not psychiatric.  He urged me to go anywhere I needed to in order to get my diagnosis.  He said I was young (tee hee) and my children needed a healthy mother.  He wanted me to get a thorough neuro exam.  And encouraged me to let him know how I was doing and to come speak with him any time I felt like I wanted to.

My World's Most Attentive Neuro tried SO hard to figure out what was wrong with me; he did.  And it meant a lot to him that I'd gone to see a psychiatrist.  It meant that I'd been at least OPEN to the idea that all these symptoms were perhaps, in my head.  AND it meant that I was desperate enough for an answer to try ANYTHING.  He knew I was that miserable.

He also noted in me reflexes of 5+ in all my limbs, and, drum roll, please....the Babainski sign.  Now, I thought I would get somewhere.  But, no.  We had a great rapport, and he tried so hard, ran some pretty great tests on me (PET scan and neuropsych testing), but in the end, he referred me to his colleague and own endocrinologist, because he thought I had Chronic Fatigue Syndrome.  Poop!
--------------------------------------------------------------------------------------------------------------------------------------------------------------------------Fast forward to present:  

Since then I have continued with my symptoms of vertigo, double vision (only when lying down and looking to the left), dizziness, hearing loss (I wear hearing aids), numbness and tingling in various and sundry spots on my person, most notably -- my thighs, feet, and left hand and arm.  My face is tingly, too, but only on the left.  Even just the left side of my tongue, which is really odd feeling, like you've burned your tongue in just some spots.  Also, when I wake up, I think, What did I have to DRINK last night, only to remember I DIDN'T drink last night.  I have the 'wet' spots and the panic feeling that I've wet my pants sometimes, but not too often, thank goodness.  The thing which I don't like is the feeling of BURNING GOOSEBUMPS on my thighs and outer thighs.  It plain hurts.

The thing I hate is the weakness in my left leg.  It brings tears to my eyes sometimes, or just makes me feel down.  When I'm lying down and try to lift it, it shakes as I try.  Much different than my right.  I hate it. And I don't smile as brightly on my left side.  It startles me to see it, like when my new driver's license came in. Hate that, too.

Of course you may have read that I was in the hospital the first of May due to an acute attack.  I went to cross my legs at my desk while at work, and I couldn't lift my left leg.  Then I tried my right.  Not happening.  I left for the doc's office, but he couldn't see me, so I got to the hospital.  

They examined me, and when I told them the same thing happened to me last year in Spring, they treated me at once with SoluMedrol. Yea!  I felt such relief that I would FINALLY get my diagnosis.  I was miserable, but happy!  Couldn't walk, but dancing on the inside.

And then, my tests started coming back.  All normal.  One by one.  Everything except my regular protein level in my LP.  It was elevated.  But that didn't mean anything to anyone.  

The hospital docs said that even with my tests coming back normal, they felt I had a degenerative, demyelinating disease, despite what my neurologist was giving as his diagnosis: "Complex migraine."  They feel that at some point my tests will match my symptoms.  That my disease will show itself.  But, my neuro is SO happy to relieve my mind that all I have is 'complex migraines,' even though at one of my early appointments with him, he said it couldn't be "just migraine disease."

So, there you have it.  If you are having trouble sleeping one night, you can read this again!

Take heart!  We all have to keep plugging!

Zilla*


Comments
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231441 tn?1333896366
by Super_sally888, Sep 01, 2008
Hi Zilla,

they certainly are putting you through the wringer..... and there's nothing wrong but complex migraines??  Complex Migraines my A##$!

Why is it that all of us can see something is obviously going on but your doctors can't.

Hang in there with whatever it takes.  Don't give up.  Your son's sure have a hell of an example of strength and courage and determination to stand them in good stead.

You are great!

Sally

Avatar universal
by Ahrdee, Dec 20, 2008
Just a though Momzilla,
there are autoimmune vasculopathic conditions which can cause MS-like demyelination/neuropathy, e.g. vasculitis , (which is also treated using solumedrol).

Vasculopathy can also cause "heart disease, diabetes, hypertension, Crohn's disease" and "osteophytes".

There are antibody tests for vasculitis and pseudovasculitis (e.g. Hughes Syndrome) which may be worth investigating.


"Cerebral vasculitis: suggested clinical patterns of presentation which might facilitate recognition (adapted from Scolding et al., 1997)
Superficially resembling atypical multiple sclerosis (‘MS-plus’) in phenotype – with a relapsing–remitting course and features such as optic neuropathy and brain stem episodes but also accompanied by other features less common in multiple sclerosis – seizures, severe and persisting headaches, encephalopathic episodes or hemispheric stroke-like episodes" European Journal of Neurology 2002, 9: 343–347


"Some people with Hughes Syndrome develop a syndrome which is very similar to multiple sclerosis where they have numbness or pins and needles, double vision or loss of part of the field of vision, and have difficulty walking. Consequently, one of the main alternative diagnoses in patients with Hughes syndrome is multiple sclerosis, and the clinical team here are continually treating patients who had been previously misdiagnosed with “multiple sclerosis”."
http://www.hughes-syndrome.org/symptoms.htm#MS


220917 tn?1309788081
by Momzilla, Dec 24, 2008
That's a great thought, Ahrdee~

I very much appreciate you giving me some other ideas.  We have spoken every now and then about vasculitis and Hughe's Syndrome on the forum after one member was diagnosed with Hughe's.  I have been tested, even without asking to be.  My current neuro is pretty sharp, I think.  Even after having had MRV/MRAs of my brain (MRI of course, too), after my last hospitalization, my neuro insisted on a CT angiogram to rule out vasculitis.  I've done the blood work for Hughe's.  All normal, like always, fortunately.

I'm sorry about your diagnosis, and hope you are feeling well.  What kind of treatment are you on?  

Take care and thnaks so much for commenting.  Feel well,

Zilla*

Avatar universal
by Ahrdee, Dec 24, 2008
Hi Momzilla,

CT angiogram cannot rule out small-vessel vasculitis: this quote is from the same 2002 journal article I mentioned above ...

"Angiography is a test limited in both sensitivity and specificity in the diagnosis of cerebral vasculitis:retrospective series suggests a sensitivity of only 24–33%".

Individuals who have cerebral vasculitis ususally have symptoms/disease from vasculopathy elswhere. So when you mentioned you had osteophytes and a family medical history which included inflammatory bowel disease, both of which can be caused by vasculopathic processes, then I thought I should mention the possiblity that your "MS" could actually be vasculopathy, which can be more treatable than MS.

230948 tn?1235847929
by uk2, Jan 30, 2009
Hi Zilla,

Rememeber me!!

Wow i never realised you had been through so many neuro's, encourages me to go for 2nd opinion as my sx dont match the dx they gave me of fibro a year ago, its been 2 years since my mri brain c spine and thrasic and LP they were all normal but i had only been having sx a few mths when i had them 2 yrs later no better and having bouts of vertigo been bedridden 2 weeks now see my ent this monday never felt so bad, got hearing lost.

anyway hope you fighting the good fight still.

sam

230948 tn?1235847929
by uk2, Jan 30, 2009
Hi Zilla,

Rememeber me!!

Wow i never realised you had been through so many neuro's, encourages me to go for 2nd opinion as my sx dont match the dx they gave me of fibro a year ago, its been 2 years since my mri brain c spine and thrasic and LP they were all normal but i had only been having sx a few mths when i had them 2 yrs later no better and having bouts of vertigo been bedridden 2 weeks now see my ent this monday never felt so bad, got hearing lost.

anyway hope you fighting the good fight still.

sam

Avatar universal
by mixedblessings, Aug 05, 2010
Hi there!
I just finished reading your journal and I can't believe how similar your experiences are to mine! Right down to ?demylenating illlness! I am still shaking my head. I'll briefly tell you a litttle about me and maybe we can walk this journey together (never did like walking alone). I am 50 and have pretty well experienced everything you have, spread ovr the course of about 15 years. Only lately things have rapidly progressed and if only I were in your shoes (back at near the beginning or at least 5 - 10yrs ago I would have perservered in getting a diagnosis. Please don't ever stop or even take a break! Unfortunately I placed too much faith in the doctors I had and I am afraid the timo e is passed where theycouldhave helped me live a longer and healthier life. Right now I am on a waiting list to be seenat Mt Sinai in TO for the vasculitis clinic. I understand they are wonderful there. When you have alot of doctors with different diagnosis it is very hard to keep hopeful, but I have 2 children 1,20yrs old with autism aend 1 12 with Down Syndrome and I really want to stick around for them.
In my case for the most part of the 15 yrs they had me dx'd with ?MS? ?demylenating illness? B12 defficiency?
Do you have a difficult time fighting infections? I think that that is when things got really messed up for me. we used PIC lines to IV antibiotics ( I am hypersensitive to many antibiotics) then they thought i got serum sicknes  pain in muscles and joints,followed my body jerks. now for the last 5 mnths my whole body feels like it is on fire, with numb sppots all over..trying steroids for the second time now and have a pain patch.
I'll be glad to get to the toronnto hospital...i sure hope it is soon. do you have a family history of vasculitis? my paternal grandmother had Polyarteritis NODOSA and a aunt just got dxd with it last year.
I look forrward to reading more of your journal ..and if you ever just wantt to chat I'll be around.

take care
mixed blessings

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