seeking diagnosis

[Guest guest]

Hi, all,

It's great to find this group!

Here's my story. I wonder if you have any insights that can help me

seek a diagnosis.

I've been having a great many symptoms over the past three years. I

have been severely exhausted, sometimes to the point of

involuntarily falling asleep. When I told my primary care doctor

about this three years ago, I was told to read " A Purpose Driven

Life " -- as if my life has no purpose (which it most certainly

does). I then experienced severe eczema over my entire body that

was never explained, but responded well to a prescription non-

steroidal cream. It mysteriously disappeared after about two

years.

At around the same time that the eczema began, I noticed numbness

and tingling (paresthesia) in my tongue, which then progressed to

severe numbness and tingling in my left hand. I also began to have

numbness and tingling on my face. I have a history of spinal

problems (lumbar fusion at age 26), so I thought it was nerve

compression and consulted an orthopedist. He ordered an MRI, which

ruled out nerve compression, so he then ordered a panel of blood

tests, including Lyme disease, B12, and thyroid. His receptionist

called me with the results and told me that everything was negative

and normal.

I was then referred to a neurologist who suspected MS. I underwent

a brain MRI without contrast that was completely clear and nerve

conduction studies that were normal. I had more blood work done,

this time looking for Epstein-Barr. My antibodies to EB were

exceptionally high (176), but the doctor explained that only

indicated exposure, not current infection. My numbness and tingling

suddenly stopped after about nine months, so the neurologist

released me from his care.

My extreme fatigue continued – some days I feel like I can barely

move. I have been severely depressed and requested Wellbutrin from

my doctor, who obliged. I've been taking 150 mg a day, but I really

don't notice much difference. I often feel very foggy and unable to

think clearly. I have gained 40 lbs in two years. I am very

edemous at the moment and my face is very puffy. My skin is

exceptionally dry and I still have patches of eczema. My eyebrows

are so thin that I no longer need to pluck them, particularly in the

outer regions. My periods became markedly heavier about three years

ago.

About two months ago, I was attempting to collect all my test

results so that I have complete records in my files. I called the

orthopedist and asked for a copy of my blood work (where I had been

told that all was normal). When it arrived in the mail, I was very

surprised to see that my Free T4 was 0.62, although my TSH was 1.1.

I called my primary care doctor and was told that I am not

hypothyroid because my TSH is normal. I did some research online

and learned that a low FT4 combined with a normal TSH may indicate

central hypothyroidism secondary to pituitary dysfunction. I asked

my doctor about that and was told that there is no such thing – that

it is a very controversial diagnosis – and that the only factor that

is reliable is TSH. He did, though, order a new panel of blood work

and insisted that I need to get a sleep apnea study as he believes

all my problems are due to sleep apnea. But isn't sleep apnea a

symptom of hypothyroidism? The blood work should be back by the

middle of next week but the doctor scheduled my next appointment for

8 weeks from now (not because of a tight calendar, but because he

thought that would be the appropriate time for me to return).

Can you make any sense of all this? I know that MS can be

relapsing/remitting so perhaps I'm in MS remission. But what do you

think about my FT4 and TSH levels?

Any insights you can give would be greatly, greatly appreciated.

Every day is a tremendous struggle.