Where Was I? ...Oh Yes: #30

So, in my unrelenting quest to find a diagnosis and treatment for my disabling medical condition, I took myself off to see doctor #30 last Wednesday.  This guy is a metabolic endocrinologist and works mainly in pediatrics. I found him through a buddy of Joe's, interestingly enough (long story). I had called  #30's office, hoping to see him, or at least to get a recommendation for an adult version of him -if you know what I mean (because he is an adult, obviously).  I mentioned before that he had called and after a long conversation, agreed to take my case.  Hurray!  Most doctors who see me coming start crying for their Mommy.

So I packed the kids off to school and undertook the 2 hour walking-and-public-transport commute to the hospital where #30 practices, which is big and internationally recognized. And far away.

What with public transport, hospital red tape and my appalling sense of direction, I was an hour late. #30 is a very kindly mature gentleman and he agreed to see me anyway. He spent a lot of time with me. He had copies of all the stuff I had faxed to him, but no printouts of the documents I had e-mailed. Now, I usually bring copies of all correspondence, but my printer had chosen that morning to run out of ink, and had crapped out right before the most important document: the one depicting the timeline and sequence of events leading up to my first fit (ugh).

Nonetheless, #30 took a detailed history, although he concentrated more on stuff before I was sick than when I was sick -we kept getting sidetracked and I had a few minor seizures, which didn't help with anyone's concentration. So with the afternoon well advanced and no-one fed, he finally sat back and told me what he thought.

"I think you have a variant of Chronic Fatigue Syndrome.."

(whaa...?)

"...and none of the treatments for it work..."  (I nodded, speechless. It is known there is nothing you can do for CFS) 

"...except ours..."

He went on to explain that there are some variants of CFS that present with right-sided weakness, facial droop, seizures and pretty much all of the symptoms I had presented with (except the drug reactions). He invited me to Google it.

I did, of course and I found this piece, which is excerpted below. I have bolded the part that I think pertains to my symptoms:

Research on subgroups of CFS is underway, but is still in very early stages. To date, however, clinical experience and limited data suggest that subgroups of CFS may include the following:

• Post-ADD CFS: Young adults who had attention-deficit disorder as children, who have flipped from hyperactivity to fatigue. Such patients have severe hypersomnolence (sleeping too much, sleeping any time or anywhere). Such patients respond well to psychostimulants.
• Neurological CFS: Patients have more severe cognitive symptoms than patients in the other groups, including trouble thinking, remembering, and paying attention. While cognitive difficulties affect the vast majority of patients with CFS, this group experiences significantly more severe symptoms. Visual-spatial problems are common as are sensitivities to light and noise. Other symptoms in this group include seizure-like episodes and other abnormalities suggestive of temporal lobe seizures. Patients in this group tend to have severe sleep problems in which they never achieve stages 3 or 4 of the sleep cycle, awaken unrefreshed, and respond well to sleep-improving drugs.
• Post-viral CFS versus gradual-onset CFS: According to some experts, an estimated 70% of patients are healthy until a particular illness strikes at a definite time. In gradual-onset patients, however, symptoms develop gradually, and patients are unable to recall any specific viral or infectious illness that initiated the process.

Further delving into my medical records, which I had brought with me, uncovered some unusually high titers for Epstein Barr (AKA infectious mononeucleosis AKA Glandular fever), which #26 had uncovered almost two years ago (but done nothing). #30 said that many people with CFS have antibody profiles that look like mine.

Then #30 went on to explain that their treatment for CFS is a structured regimen of exercise therapy and nutritional support, which would have to be undertaken diligently for several weeks before any results would start to show.

Now I have no problem starting a monitored exercise program. I would love to lose a bit of weight and my response to exercise has been a bit ...um ...unpredictable in the past. I was fired from Physical Therapy for having too many seizures in their office.  But I asked the Big Question anyway (already knowing the answer):

"Could I do this program near my home, or does it have to be in the hospital?"

"It has to be here, in the hospital"

Fuck. I was afraid he would say that.

Here is my problem: Himself and myself are (legal) immigrants with two special-needs kids. We have no family or close friends nearby who can help us. The hospital is two hours away, only accessible via public transport and there is no-one who can accompany me on these trips. Therefore, if I go to the hospital, do my thing and then have a massive seizure on the NYC subway going home (or there!), I am basically screwed. -An epileptic lady I once struck up a conversation with on the subway said that if you have a fit on the subway, they call 911 on on your mobile phone and then take off with all your jewelry and belongings. At least they call 911!

Even supposing I don't have a fit: Grace gets on her bus at 9am and Joe gets off his bus at 3:10pm:

Allow an optimistic two hours to get to the hospital: 11:am

Allow 40 minutes for hanging around, getting registered and prepared etc: 11:40am

Allow 40 minutes to do the exercise program: 12:20 am

One hour (at least) cool-down and monitoring: 1:20pm

Two hours to get home and discover a hysterical Joe on the doorstep: 3:20pm

...and all this is assuming no problems or delays. There is no way I can do it.

Himself has been good about working from home on days when I have to schlep into the city for a doctor's appointment, but he can't do it three days a week for three months. And there is the other question:  What if I am in the hospital, and I get a call from the school, that Grace has dislocated a hip, or Joe has had a meltdown?  I will be two hours away and Himself -if he is at work- will be over an hour away in a different direction. There is on-one locally who would be able to deal with either of them under those or similar conditions.

That won't do.

In a way, I am stressing out prematurely about this. I had seven or eight vials of blood taken yesterday for #30 to review. Maybe he will find something not indicative of CFS therein and will change his treatment plan?

I guess we will wait and see....

Comments

[Roanmom]

As they say at home
"Yes, but...no,but....yes,but....no,but....."

I totally identify with such a dilemma; you don't have a support structure because your ARE the support structure. Take away the what ifs, (school calls you etc) this sounds like the closest you've come to any real answers. I could throw out the usual, respite, negotiating your sessions down to 2 times a week; haranging hubby to at least work at home once a week.

My istinct is to wait for blood results and plan from there....however I am personally barring the door as that fecker Hope is all smooth talk and plucking feathers;)

[fridawrites]

My goodness, I can understand you'd have some anxiety about being away that long (and that far). I am wishing you had some of the school parents we had, who asked what they could do after my spine surgery--and we doled out tasks (a big one was transport to PT for me so husband didn't lose his job doing it--2 hours plus an hour of transportation). They would have met the kids if I needed too--I think they did.

[One Sick Mother]

Roanmom,
Yes, I am waiting for the bloodwork and then we'll take it from there. I am hoping the guy will be able to set something up local to me -maybe do the first baseline session at the hospital, but the rest of them with someone here, under his supervision. He used to be based out this way, so it is not an inconceivable notion.


Frida,
You know, if I ask, I'm sure some of the parents will be willing to help. it's just a little tricky the way the neighbourhood is set up, most of the people I am friendliest with are on the other side of town (and Joe's school bus doesn't go over there, but Graces does!).

Another part of the problem is my own fear; knowing my kids as I do, that they may not do OK with being our of routine -especially with people they don't know very well.

But as Mother Francis used to say: "where there is a will, there is a way" So we will (somehow) figure out a way.

OSM