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jimash
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Letter to my doctor who has never seen me
« on: Feb 23rd, 2003, 6:39pm » |
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I just quit Topomax. For a day I feel much better. Boffed the wife,. got a good night's sleep ate pretty good. New doctor wenesday. Can't wait to hear from Dr. S..
Note that the history portion of my letter was presented on paper and orally a year ago.
Dear Dr. Silberstein,
I have been attending your clinic for one year now and am getting the feeling that you and your staff want nothing to do with me. I feel as though I am getting "short shrift" from your organization. Yesterday a nurse told me that i should go to mexico or canada to obtain the medication that I know works for me. In practically the same breath she refused to make a prescription on the phone for me on the grounds thatt that would be "bad medicine".
I believe that your staff is under the misguided impression that I have come to your establishment merely to indulge in some recreational drug habit. Nothing could be further from the truth. I was referred to you by Maryann Piccone of the Gimbel MS center in Teaneck NJ, who was my doctor for some years. As you will read below she was brave and kind enough to help me to continue with my therapy for years and no harm came to her. No pharmacists have been injured.
Dr. Siow was rude to me and inferred that I just wanted to get "high".
He did not understand that the "high" iis an indicator to me that the next day I shall not suffer.
It would seem that Dr. Young wants to keep me at arm's length, and that any reactions or feelings that I may have that do not constitute a ringing endorsement of Topomax, (such as my negative reaction to the bizarre halucinogenic side effects and my complete sexual dysfunction under it) are to be ignore as though they don't exist. My experiences, 31 years worth , are to be discrded. One would think that you would be interested in hearing what an actiual person with an Iq over 120 might have to tell you about how a cluster headache feels or how I react to this or that drug, but you are apparently too caught up in your fame, success and your own "endorsements" to care.
I was there on Feb. 4 and had a chance to observe you. I saw you with the needle in your hand . I saw the line of tottering females coming in and out. I saw the look of golden self satisfaction on yoour face. Do they think you discovered Lidocaine in the neck? I had that 20 years ago at MT. Sinai! Dr. Young acted as though you guys just discovered oxygen. I had an oxygen tank in 1974. Who do you think you are snowing? Get off of your throne and stop playing tin god to the drug companies. I do not need to be a marker in the "good ' column on a spreadsheet for Topomax. I need to be treated as an individual. And how is it that you can boast of your close relationship wit the drug companies and yet when I ask that a Chemist or pharmacist from there be consulted, Dr, Siow gows into a "hissy fit"?
And why is it that even though I am spending cash (since you are refuing my Insurance) taking a day off my work, and driving over 150 miles total, and still cannot see a "real" doctor, only these second string imports.?
I want you. I want a real doctor who is old enough to remember CafergotPB. That was tthe only thing that worked and it is where i got the idea and formula for the treatment that has made my life worth living for 10 years.
for 10 years I took 50-100 mg. of nembutal and one cafergot pill every night. I never had to increase the dose. It always worked I never became clincally "addicted" Never crashed my car or OD'd . All I did was have the normal life that I had NEVER had before. Dr. Young was kind enough to help me with some tuinal which is not quite as good but I made it work for several months but that is gone too. It is insulting to come there and have to hear about "habituations" and "liabilities" when you are suppose to be the experts and big cheeses and head honchos. You are suppose to have the GLANDS to write a few words on a piece of paper for a patient. I presented in distress with a headache and Young still made me waitt weeks for meds. Is that good medicine? Is not Lydocaine and corticosteroids in the neck habit-forming? Is there no potential liability to shooting people in the face and head with Botulinim Toxin? You seem to have no compunctions about that. And isn't that just painting over the rust? Have you ever even looked at Clusterheadache.com?
Why Not?
Well, enough about you, when I came to Philly I brought a CDRom with a badly typed history onn it.
Dr. Young was scared to take it and put it in a computer.
I paste the contents here for your edification. Excuse my typing and my misbehaving keyboard.
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jimash
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Re: The history -Guaranteed the truth- boys and gi
« Reply #1 on: Feb 23rd, 2003, 6:41pm » |
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Hello, My name is James Asherman. I have been diagnosed with Chronic intractable Cluster Headaches for the past 30 years.
It Started in 1972 when I was 17. My famiy was on a cross country travel-trailer trip and I was allowed to sleep one day while we traveled . I remember waking up with the awful headache and being unable to communicate with anyone. I HAD had a car accident earlier that spring in which I damaged my face and teeth.
My Father brought meto quite a few doctors. I went to Montefiore clinuc and visited a DR Javerbaum (who told me that their stuff was not going to work for me because he could see my symptoms and could not in good conscience put me in the biofeedback program. and we visited DR. J. Frankel; of Livingston. DR. Frankel told me I had Cluster headaches. Under his care I remember trying Inderal, Sansert, and bellergal spacetabs and finally settling on Cafergot PB for which he gave me a permanent prescription.
Itook an EEG a brainscan and a cat scan all negative.
During this time I took CPB abortively and I sort of got along. My headaches often struck Just before bed or just after awaking or when the sun was in my eyeys on the way to work. I have never been able to keep a job that required me to show up on time early every morning.
When the permanent prescriptions became a thing of the past I called DR. Frankel and he
Reccomended Mt. Sinai. I saw a DR Steinberg who worked under DR. Coddon. Dr Steimberg gave me a lot of different m,edications. Cafergot suppositories, compazine suppositories, Elavil, Valium, Lithium carbonate, ergomar, Chloral Hydrate, lidocane drops and etc. He even tried shooting my shoulder up with procaine and manipulating an adhesion. We did an agonizing 4 hour glucose tolerance test . No diabeetes.
My headaches did not subside and despite being told they would go away with age when I reached 30 years old they became worse.
Cafergot PB was the only thingthat ever helped and I was getting it froma family doctor, DR. Goldfarb. When they withdrew CafergotPB, I started taking a combo of cafergot Compazine phenobabital valium and percocet. I could easily take all this stuff and still have a headache.
I lost many jobs.
Dr Goldfarb changed his practice in 1991 and was no longer able to see private patients and I determined to try cold turkey. 10 months of no meds in 1991 and it got worse every night . fior most of that year I never spent more tyhan two hours asleep which ios whats happening now too.
I saw a bunch of quacks who held themselves out as experts and became so agitated at my situation and lacck of care that I saw a DR. Murphy A neuro-psychiatrist. I asked him for cafergot and nembutal(the active ingredients an cafergotPB, The onlt hting that had ever worked)
He said he would do it if I got a confirming D=iagnosis from DR Duvoisin(sic) at RobertWood Johnson Hosp. in New brunswick. I saw a DR. David Geldmacher there who took pity on me and gave me the cafergot and teh nembutal because the's what WAS in the old meds.
Relief.
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jimash
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Re: history part 2
« Reply #2 on: Feb 23rd, 2003, 6:42pm » |
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DR. Geldmacher soon moved to Cleveland and left me in the care of DR. MAryann Picone.
about once or twice a year I would have a breakthrough cluster and be teatred with a short course of prednisone which usually works in the short term. I continued my successful therapy(1cafergot pull and 1+1/2 50 Mg nembutal nightly)
She kept moving her practice arther away and I had my local dr. DR FRank of Greenbrook NJ prescribe for me on her say so.
When they hit it starts as a pain in the shoulder and a pressure in my head then the burning eye and running nose and then I just turn into a blind pain machine. Firey waves of pain up through muy scalp which at the moment is covered with trigger points.
I use excersize but it is not working that well in the night. I sleep sittng up on the couch.
I smoke and drink coffee. Under my old regimen I could have an occaisonal glass of wine but at the moment that would be imprudent.
They are worst two ours after I go to sleep and persist all day returning 2-5 times daily in force.
6 days a week 365 a year.
Even though obtaining the prescriptions, transferrring my treatment to different doctors when the old onews moved away, and dealing with pharmacies represented significant hurdles, I was abe to follow a treatment that provided me with a SIGNIFICAnTLy improved quality of life and the time I was on this medicationn ( along with cafergot) WAS the most conventionally productive time of my life. I have not had any addiction problems and afer more than 9 years I was still taking the same dose and getting the same releif that I got the third day I took it. Now the Abbot labs company is no loonger producing nembutal, and I must go through a new round of examinations and experimentations in oreder to obtain proper treatment. I feel that I need Barbiturates. Thesed drugs are made legally in factories and te idea that I cannot gain access to them, despite being triple diagnosed with a condidtion described as " the worst pain known to medical science(short of having your eye gouged out) ) is absurd. That I have to suffer the tortures of the DAMNED almost every night , because licenesed professionals are afraid to write a word on a peice of paper, for fear that they might have to answer a question, offends me. I am on a drug called Ambien. This is apparently a controlled substance and presents the same problems that Barbiturates do at the pharmacy. It is supposed to be a powerful sleep inducing tranquilizer but I take a dose and a half and wake up in two hours with a blazing suicide headache regardless.(when I informed my neurologist of this and asked for something stronger, she gave me a bottle of valium for the road and advised that i seek other treatment alternatives ( the kiss-off). I need something stronger but the professional healthcare people are so spooked by regs that i will soon be forced to the street to obtain my meds. thanks Jim asherman
And now I sense the Kiss-off from you too/ I am NOT a drug addict. I am a family man with a stable Marriage and a child and a quartermillion dollar house.
James Asherman
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jimash
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Re: Letter to my doctor who has never seen meand w
« Reply #3 on: Feb 23rd, 2003, 6:46pm » |
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I am still not satisfied so I sent another email.
After spending another sleepless night wattching the ceiling flow like a waterfall and lights flashing hither and thither and
and listening to the refrigerator play me a medley of it's greatest hits courtesy of Topomax, I have a few more questions.
You don't know who I am do you? You and Dr. Young ,who DOES know who I am treat me as though I do not exist.
Why?
What purpose would itt possibly serve me to come to a specialist, and pretend that I didn't know for the past 30 years
exactly what I have or what makes it feel better?
Why should I want to take another trip through the Pharmacy ?
Why would you let Nurses be RUDE and Sarcastic to me as though they do not believe anything that I tell them , even thought I only tell them the truth. ?
Why on God's green Earth would you take a person who comes to you in good faith with a 30 yeear history of the worst, most painful, most challenging, thing one could possibly have in your field, and CONSISTENTLY, at every visit, fob that person off onto the least experienced Dr. on staff? What could the rationale behind that bonehead move possibly be?
Assume for a moment the best for me/ worst for you scenario : I come to the offiice and Dr. Silberstein actually deigns to see me in his office. He takes pity on me and writes me a prescription for narcotics in his own hand.
By some quirk of fate the BNDD Does actually call him. The conversattion might go somethhing like this:
BNDD: Did you write this scrip for Narcotics for J. Asherman?
S.S. : Yes I did.
BNDD: Then iit's not forged. OK. Why did you write it?
S.S.: Because Mr. Asherman has the worst, most painful, thing thing a person could possibly have which is well within my feild and provenance to treat, and it is my authority, my responsibility, Nee´ My DUTY, to give this poor wretch ANYTHING legally available on the planet that will actually ease his daily suffering, and you should get on your knees and thank whatever god you worship that you don't have to spend even ONE of the thousands of terrible nights tthat this man has had to endure in his lifetime.
Now, considering the utter and complete truth of those statements I have to ask WHAT could POSSIBLY come after that that would scare you in your vaunted position ? WHAT? No really WHAT???
They are NOT GODS! Challenge them to do some damn work!
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suzy617
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Re: Letter to my doctor who has never seen me
« Reply #4 on: Feb 23rd, 2003, 6:52pm » |
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Hi James and welcome.
Have you ever tried imitrex or 02? Many have great results with these.
suzy
BTW would you care to share some of your energy? 
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| « Last Edit: Feb 23rd, 2003, 6:58pm by suzy617 » |
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jimash
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Re: Letter to my doctor who has never seen me
« Reply #5 on: Feb 23rd, 2003, 6:58pm » |
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Suzy , I appreciate the thought.
O2 as I mentioned I tried some 29 years ago. It just doesn't cut it. Vigorous exxcersize is preferable if that's all ther is.
No one will give me iimtrex becasuse generally speaking, whatever i take it has to be every day .
My main requirement is that I be drugged up good at bedtime and be able to shake it off after coffe in the morning. I cannot shake Topomax and sit like a mental patient whao can only watch tv and smoke.
Thanks
Jim 
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Not4Hire
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Re: Letter to my doctor who has never seen me
« Reply #6 on: Feb 23rd, 2003, 7:14pm » |
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hey James...now we can get back to DJ's reason for this Message Board......
and as we say say, sorry you're here--glad you found us.
It is obvious from your post you've run the gamut--bad/ignorant doctors--greedy/ignorant pharmacists/drug companies-- and equally obvious that you've done yer *homework*.
I am very sorry you're suffering and unfortunately, I have no *magic bullet* that will end/cure your malady. If I had that *bullet*, I would have fired it / shared it/ notified the press. I fervently wish that ONE in TEN of the sufferers who (gratefully and thankfully) have found this site, would have had the intelligence to post such a powerful and poignant history of the utter $hit that you have endured.
Brother, I can say that I am encouraged by your sharing of your experience. I feel that is what this forum is about--sharing the experience, having a place to vent and rant, looking under EVERY stone for a cure, and I hope you you find your *key*. If I can be of assistence in any way, please contact me.
Thank you for sharing your information......
Best regards, Steve (N4H)
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jimash
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Re: Letter to my doctor who has never seen me
« Reply #7 on: Feb 23rd, 2003, 7:20pm » |
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Steve,
Thanks for getting it.
I HAD the magic bullet.
They took it away. And they are too lazy to help me find a new one.
Jim
Have you plugged Dr. Stephen Silberstein into your search engines?
Jim 
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suzy617
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Re: Letter to my doctor who has never seen me
« Reply #8 on: Feb 23rd, 2003, 7:42pm » |
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Jim, you have email....
suzy
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Roxy
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Re: Letter to my doctor who has never seen me
« Reply #9 on: Feb 24th, 2003, 12:24am » |
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Jim,
I'm very sorry for the pain and the troubles you are going through. I too, am chronic. With mulitple hits daily, it's very hard to make the imitrex last..... but, it is available online w/o a prescription. It's not much cheaper...but, you can order plenty to get you through.
If it's been that long ago (29 years) since you tried 02, it might be well worth your while to try it again. If it isn't breathed at the right rate, and with the correct mask....it won't work. How did you use it? Was it with a non-rebreather mask? There are quite a few on this board that are very knowledgeable about 02, I am sure they would be more than happy to help you out, and explain how to use it properly.
I am so glad you found this site and shared your story with us. Most of the members here have their own horror stories of doctors and treatments....but, your story is amazing...and, I hope you feel somewhat better for telling it (even if it doesn't help your head...  ).
If I can help you in anyway....please email and let me know....welcome to the board.
PFDAN,
Tracey
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Mark C
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Re: Letter to my doctor who has never seen me
« Reply #10 on: Feb 24th, 2003, 1:02am » |
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Welcome aboard Jim,
I am sorry about the head and the inept Doctors, you are in the right place. I had about the same experience with Topamax, rat poison. I don't have much else to offer an old veteran like yourself but welcome!
PFDAN's
Mark
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jimash
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Re: Letter to my doctor who has never seen me
« Reply #11 on: Feb 24th, 2003, 1:06am » |
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Notice that it is 1;21 AM and I am doing this. That is bad rigt there.
I am going to cut and paste it makes me sound snippy so try not to cut me up. heh heh.
I too, am chronic. With mulitple hits daily, it's very hard to make the imitrex last..... but, it is available online w/o a prescription. It's not much cheaper...but, you can order plenty to get you through.
If I took enough Imitex to get ME through my veins would shrivel and I would be Dead. That is why NO doctor will give it to me .
If it's been that long ago (29 years) since you tried 02, it might be well worth your while to try it again. If it isn't breathed at the right rate, and with the correct mask....it won't work. How did you use it? Was it with a non-rebreather mask? There are quite a few on this board that are very knowledgeable about 02, I am sure they would be more than happy to help you out, and explain how to use it properly.
Well, Dad got it from the ambulance squad and showed me how to huff it. then I'd wear it for a while , and read.
I am so glad you found this site and shared your story with us.
Oh don't think I just shared it with you..
It is going to whom it was addressed to and his boss, the administrator of whatever as well.
I can be a VERY effective complainer when the mood strikes me.
And as I said to the Nurse " when I was in my twenties, this was frustrating, I will be 48 next week, now it's insulting".
Most of the members here have their own horror stories of doctors and treatments....but, your story is amazing...and, I hope you feel somewhat better for telling it (even if it doesn't help your head... ).
Thanks I do. Partly this is because they did make another appointmnet for me some 6 weeks down the road. But I can smell that this one will be the "You should seek other treatment alternatives" +25 valiium and out -$130. Screw that. Not quietly anyway.
And you all should know too. It has sucked.You should have seen Young's face when I told him that if he was going to send me home with Verapamil, I wanted his Home, by the bedside, phone #.
If I can help you in anyway....please email and let me
know....welcome to the board.
Thanks,
Jim
Tracey
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Woobie
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Re: Letter to my doctor who has never seen me
« Reply #12 on: Feb 24th, 2003, 8:33am » |
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Hi Jim..
Welcome!! Sorry you're going thru so much BSHI**!!
I hope you get some relief soon!!!!
Check your email.
Tina
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jimash
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Can you say screaming match?
« Reply #14 on: Feb 24th, 2003, 11:35am » |
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Just got this:
Hi Jim,
I have passed everything you have sent me to our administrator. He has
givenyour emails to the doctors at the Headache Center and they are
discussing the matter. At this point, I recommend that you wait to hear
from one of the doctors or the administrator. I am actually in the research
department and thus can only operate as a middle-man passing along your
message. I appreciate your patience.
Sincerely,
Melissa Bloom
Melissa Bloom
Clinical Research Coordinator
111 South 11th St. Suite 8130
Philadelphia, PA 19107
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jonny
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Re: Letter to my doctor who has never seen me
« Reply #15 on: Feb 24th, 2003, 7:17pm » |
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Jim,
Give the 02 another try, I tried it 13 years ago and it did nothing for me. When I washed up here 3 years ago I was taught how to use it and now 02 kills every headache if I can get on it as soon as it starts.
Good luck to you, Bro
..............................jonny
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| « Last Edit: Feb 24th, 2003, 7:20pm by jonny » |
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jimash
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Re: Letter to my doctor who has never seen me
« Reply #16 on: Feb 24th, 2003, 7:45pm » |
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Jonny,
I am happy that O2 works for you. I breathe free.
I do not want to start any.
Then it's a cycle. a Drug can BREAK the cycle, more effectively.
What do you do on an airplane, did you ever have one of those?
How about in the car?
What about on a job in public or at a business meeting or trip?
ZERO protection from the most embarrasing, job losing ones.
A non-starter.
anyway Thanks . Us grownups gotta stick together
Jim
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| « Last Edit: Feb 24th, 2003, 7:50pm by jimash » |
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jonny
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Re: Letter to my doctor who has never seen me
« Reply #17 on: Feb 24th, 2003, 7:50pm » |
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Seems to me that people spend more hours at home than anywhere, 02 could help you at home.
Just a thought................. im pretty lucky owning a welding shop I can haul a tank where ever I go and it dont cost me a dime.
I hope you find what works for you.
............................jonny
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jimash
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Re: Letter to my doctor #UPDATE+
« Reply #18 on: Mar 15th, 2003, 10:51am » |
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So, I sent the emails above to this doctor who runs the center where I am being treated as a subhuman.
They did not respond . I quit the topamax .
All the bad side effects went away.
I can eat sleep and do sex reasonably well. I can find various places in the car.
Then a certified letter came.
To reduce the typing I shall summarize.
They are afraid of me. They think I will do something to them.
They want me to see a psychiatrist. (even thoughh they have three on staff)
They want security to accompany me on visits.
They cancelled my scheduled visit
I replied Thus:
March 14, 2003
Dr. Stephen D. Silberstein
Jefferson Hospital
111 Souyh 11th St.
Philadelphia Pa.
Dear Dr. Silberstein,
I have read with interest the letter you sent me.
I would like to apologize for any worries that my words may have caused you. I atttribute my extra irrittability and frustration to the negative and adverse reactions that I was having from the medication, Topamax.
When I reported to at least three separate people my concern
and and inability to cope with the side effects that I was experiencing form Topamax, I was met with an attitude that struck me as a combination of disbelief and disinterest.
When I was asked by a nurse, “Are you always so sensitive to medications ?” and told to stay on it, I detected a derogatory and innappropriate tone. When the nurse toold me to “go to Mexico” I was highly insulted. That is not the type of help that I come to your establishment to recieve.
I was angered by this attitude of indifference and disregard,
and wrote to you an intentionally inflammatory annd insulting letter in order to get some of the personal attention that I saw you lavishing on others while I felt I was being treated in a callous manner.
I felt that I was spoken to and treated in a derogatory and insulting way and spoken to in a “tone” that I found offensive. Thus my “ tone”. As far as the staff being “threatened by my sentiments” , You should note that I have not threatened anyone or anything. I am a gentle man, and no one has been physically injured by a sharp tongue.
My letters were inended as a personal correspondence to you
but you have permission to show them to Dr. Tramuta.
You have demanded that I see a psychiatrist. I note that the psychiatrist’s interview is yet another standard item that was not afforded me at your center. I woud suggest that I could speak to him before I see you on March 17.
I am stonished tthat you do not understand me.
I am angry. I have been angry about Cluster headaches since
he Nixon administration and doubly so since the withdrawl of the medication which was so succesful for me for 9 years.
I am angry at being treated withh a distinct lack of respect or concern on the part of your staff.
I am angry that I have been lied to about the status of my insurance coverage . I was told that my insurance would no longer be taken and was issued and paid a bill for a visit.
On the next visit I was told that my insurance was not going to be taken but that I would still need a referral.
Now I have recieved a report of your submission to my insurance company of the fee for that visit. This is all very suspicious to me.
Where should I go to obtain a replacement fro my succesful treatment? Mexico? I do not think so. I have tried to do everything right and follow everyone’s good professional advice, to my frustration and discomfort.
Am I oversensitive? Certainly.
I am so sensitive that I cannot wear a wristhingych or wedding ring. A rough T- shirt label is intolerable. Though you give this phenomenon lip service you seem uninnterested when one of these “sensitive brains” stands up and demands some individual attention. Astonishing.
Only you can make the decision to see me or not. That is certainly in your discretion.
Dr. Young is no longer my doctor.
I would like a copy of my charts and comments sent to my home.
We can start again March 17, or not . Purely up to you.
Sincerely,
James Asherman
I will not let them off the hook.
Jim
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