scott
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Oliveoponpocerevela Atrophy (long!)
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Aug 6 11:04 UTC 1996 |
(This was mailed to me by linda (formerly odakim) to turn into an item, since
she wasn't sure how to convert mail to conference items -scott)
Dear Scott and Rane;
Would you consider posting this on the health bbs for discusion or
help for Bill. Bill is about 52 years old and been wrestling with this
problem as written. Bill was an airline pilot before this situation. I
understand he drinks wine. I am not sure about harder liquor and don't
know how much he consumes.
>
>Yes Linda, you may share this..so I decided to levae the whole message
>here with my response so they know it is ok with me.. I have updated
>a little in this last paragraph, otherwise the rest is the same..L...Bill
>
>> >Went back to doc 4 today, Aug 1, for another lateral vision test. Doc 4
>> >was out so saw doc 10, his partner. The results of the test were
>> >identical to the test in Jan, lateral vision was fine. I gave him the
>> >information I had uncovered about a possible cause of the problem and
>> >docs that might know..I provide at the end of this history. TTYL
>> >
>> >Doctor:
>> >1 - Primary Care Provider DO, Dr Kent Bray
>> >2 - Optamotrist Doctor, Dr Paul Wagner
>> >3 - Opthamologist Doctor, Dr Robert Waldie
>> >4 - Opthamologist Doctor, Dr Stuart Sondheimer
>> >5 - Opthamologist Doctor, Dr Robert Wilson
>> >6 - Opthamologist Doctor, Retina Specialist, Dr Herbert Waldoff
>> >7 - Infectious Disease Doctor, Dr Lee Fanning
>> >8 - Infectious Disease Doctor, Dr Sen Jou
>> >9 - Neuro-optamologist Doctor, Dr Michael Powers
>> >10 - Opthamologist Doctor, Dr Vincent Piraino
>> >
>> >Oct - starts getting hard to read, buy stronger reading glasses at
>> >drugstore. My feet start to feel cold.
>> >
>> >Oct - eyesight gets worse, mention it to doc 1sends me to doc 2
>> >
>> >Nov - go to doc 2, fully checks my eyes, dilated, no evidence of
>> >glaucoma, cateracts, or any other eye problem, gives me prescription for
>> >both reading glasses and distance vision
>> >
>> >Nov - feet start to feel colder, with a very slight tingle.
>> >
>> >Nov - go buy two pairs of lineless bifocals, still can't read but they
>> >tell me it could take a couple of weeks to get used to. One week later
>> >can still not read so buy a pair of plain reading glasses, still can't
read. >> > >> >Dec - the slight tingle in the feet becomes defined, with a
consistent >> >feeling all over the feet with the feeling up to just below the
ankles. >> > >> >Dec - got to doc 1, he sends me to doc 3, who again thoroughly
checks my >> >eyes and find no problem..go back to doc 1 and he sends me to
doc 4 for a >> >second opinion and further tests. Again he finds nothing
wrong, says the >> >prescription is correct and that I should be able to read.
He sends me >> >to have two MRI brain scans, one with an injection. My
lateral vision >> >and eye muscles are further tested and nothing is wrong.
Doc 4 sends me >> >to doc 5 to have my retinas photographed. >> > >> >Jan -
wake up one morning and the tingling feeling in my feet has shot up >> >each
leg to just below the knee. The feeling is the same all over. >> > >> >Jan - I
then take retina photographs to doc 6 for evalauation..doc 6 >> >again
thoroughly evaluates eyes and finds nothing wrong except sees a >> >very small
evidence in the retina photographs of the possibility of an >> >ingectious
disease..doc 4 and doc 6 confer, agree to send me to doc 7. >> > >> >Feb - Go
back to doc 1, who takes 6 vials of blood, I am tested for >> >everything he
could think of, including HIV, all tests come back negative. >> > >> >Mar -
take results of blood tests to doc 7, he orders further blood >> >tests and
has me return in several weeks. When I return, he diagnoses me >> >as having
pernicious anemia, a vitamin B12 deficiency..instructs me to >> >take a B12
shot once a month. >> > >> >Mar - tingly feeling in the calfs of my legs start
to diminish. >> > >> >Mar - go back to doc 1 and report findings, he instructs
me to take a B12 >> >shot once a week for two months, then to return..doc 4
and 6 are informed >> >of findings course of treatment. Take b12 shots for
six weeks and have >> >no change in my condition, then receive a call directly
from doc 4 who >> >tells me that he had talked with doc 1 and doc 6, and all
three say they >> >don't think I have pernicious anemia. doc 4 instructs me
to go to doc 8 >> >for further tests. >> > >> >Apr - tingly feeling in calfs
almost gone but tingly feeling in feet is >> >sharper. The feeling in calfs
is still not normal. >> > >> >Apr - go to doc 8 who takes five more vials of
blood. He also prescribes >> >me to take two 100 mg pills of tetracycline
each day. I return a week >> >later to find all tests negative, he takes two
more vials of blood for a >> >final test. They have taken 22 vials of blood
to date. Still no change >> >in my condition. >> > >> >Apr - feeling in feet
is sharper, almost hurts to walk on them, feels >> >almost like walking on
gravel..even when wearing shoes. >> > >> >May - return to doc 8, he says I do
not have anything..adds that I have >> >one of the strongest immune systems he
has ever tested. >> > >> >May - I inform doc 1, 4 and 6 of the negative
results. Make appointments >> >with docs 4 and 6 for June. >> > >> >Jun -
Went to doc 4 and had my eyes thoroughly checked again. They could >> >still
find nothing wrong. But the good thing is that my eyes have not >> >gotten
any worse. I aksed what is my vision then and he said 20-400 and >> >then I
asked him what legally blind is and he said 20-200. So I guess >> >now I will
start exploring "help for the blind" options. There is a >> >non-profit group
dedicated to helping blind veterans and we put a call in >> >to them.
Supposedly they can provide all types of support, including >> >magnified
computeer screen covers and so on. Then doc 4 said he thought >> >the next
step should be with a high rolling specialist in >> >neuro-opthamology, and
called doc 1 while I was there. So I go to see >> >doc 1 next Wed and as my
PCP he can refer me to that doc for further >> >tests and evaluation. And the
beat goes on:):) >> > >> >Jun - Went to Doc 1 and he said he had no idea what
to do next. I asked >> >him about the neuro=opthamologist and he said he
didn't think it would >> >help but I could try it. He gave me two
prescriptions, one for massive >> >B1 and also Folic Acid. I have mom call
doc 9, earliest appointment >> >available is Jul 17. >> > >> >Jun - Took the
two prescriptions all month, still absolutely no change in >> >wither my feet
or eyes. I continue to be mauseous daily from the >> >doxycycline or whatever
it is that was prescribed by doc 8, so I quit >> >taking it. It had not
helped anyway. >> > >> >Jul - Still no change of any kind except the nasea has
gone away. It is >> >a pleasant relief. I never really "barfed" but was
experiencing that >> >convulsion from the stomach up every hour or more
frequently. >> > >> >Jul - 17th, just got back from doc 9 and he can still
find >> >nothing. Basically, this was a neuro specialist and said I have
nerve >> >damage, from an unknown cause..but he thinks it is a combination of
diet, >> >age, and my bad habits (smoking and drinking). He is an extreme >>
>specialist in these things and was very straightforward. He had reviewed >>
>all my records, and said that there were no more things to look for. So >>
>I either have "Bill Gunkel Disease" or am just suffering from old >> >age:):)
I will not give up, but plan to stay away from the doctors for a >> >while.
He also said it wouldn't hurt to keep taking vitamin B12 shots >> >once a
month..and to take more vitamins. He also talked about peripheral >> >nerves,
the ones that appear damaged. And he said that although people >> >talk about
the optic nerve, it is really a direct connection between the >> >eyes and the
brain. His prognosis was that if I simply corrected my >> >diet and habits,
it might improve my legs and feet in a few months, maybe >> >to normal, but
did not think my eyes would improve by as much as half. >> >He again said I
have 20-400 so that means at best..20-200. So I am going >> >max guns to go
ahead and sell my car..since I cannot drive. I will >> >probably use the
money to travel..I have found that most airport signs >> >are designed for
vision impaired people. I will just have to keep my >> >hand on my wallet:):)
>> > >> >Jul - The 4th is tomorrow, less than two weeks to the next As I
said in >> >the beginning, I went to the doctor today, July 17th..with no new
news as >> >such. Tomorrow is another day:):) >> > >> >Aug - Went back to doc
4 today, Aug 1, for another lateral vision test. >> >Doc 4 was out so saw doc
10, his partner. The results of the test were >> >identical to the test in
Jan, lateral vision was fine. I gave him the >> >information I had uncovered
about a possible cause of the problem. A doc >> >Sharon Johnston has
discovered something that causes the same symptoms as >> >I have. It is
called Oliveoponpocerevela Atrophy. Dr Johnstone, I >think has a pratice in
Scottsdale on 2nd St. also works with Dr >George E. Bryan, who is in Prescott
but also is a professor >at St Joseph's Hospital in Phoenix, but I think both
of them work at >the Barrow Neurological Institute which may be in Tucson. I
provided >dfoc 4 with their phone numbers, and that of Dr Johnston's
assistant, Helen >Nunnally. I found out that Helen is actually the patient
with the >same sumptoms as me. Helen is currently in a Charter Hospital in
>Chandler being treated for depression. I am currently in from of my
>computer being treated for depression, smiling, with a glass of cold >Chablis
and the TV no longer on the Olumpics:):) But I enjoyed the >Olympics..we
shall see:) >So the beat goes on:) >> > >> Dear Bill.. I am so saddened by
this for you.. you deserve so much better. >> You are not old.. and I care for
you dearly. >> >> With your permission I would like to send this to someone
that posts on >> a health bba I belong to on GREX. They might be able to
suggest something >>or at least discuss you:) what do you say? > >> Linda >
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