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So Many Questions - Please Read and Advise
9 Replies
sad mother - January 14

My problems started when I had my first pituitary tumor removed in 1979. There were an additional 9 surgeries and I said stop. I had no pituitary glands left, a unrepairable CSF leak (off and on) from my left nostril, an AVM on the top left side of the brain, an adrenal insufficiency. The surgeries were all at MD Anderson Cancer Center in Houston. I had fantastic doctors, and they told me they would not only take care of me forever, but that they actually wanted to take care of me. They are all gone now. The place has changed, grown and become less personable and more a business center. They don't want to follow anyone, unless they can write another cancer paper about them. My tumors were benign so I am a 'problem'. I have been vanished to the Pain Department/Clinic and my other doctors, neurology, internal medicine, head and neck, and so on, don't ever really check in on me. I was lucky, 10 years ago, when I started to fall apart, that the chief pain specialist, Dr. Allen Burton, was also doing studies on FMS. He began treating me with this and that but was hesitant to diagnose me. I felt we were making progress and then he went back into research. I was passed around to this doctor and to that doctor and now I am taking about 13 medicines a day and I am hurting more than ever. I have not been out of the bed this week for more than 30 minutes. I finally broke down and I am realizing that I cannot do this alone. I need you guys for support. I need your experiences to help me figure out what I can do for myself. I cannot just be swept under the rug by my doctors any more. I go see them and their response is, "Oh, take this". To just add another pill to my regime. I feel as though someone should look at my blood and check my liver and on and on. I have been leaving messages for two weeks and no response. Does anyone know a great doctor in the Houston area? I am about to just go check in a hospital - but I know they won't do anything. The pain is all over and the heat is incredible and I cannot walk, I can't sleep, I cannot get comfortable in any position. I need someone in the medical field to care. Thanks for letting me vent. I don't feel like spell checking this - sorry.


sad mother - January 14

In my venting, I forgot to say that I believe the lack of the pituitary glands and a possible problem in my hypothalimus (SP?) are direct causes of my FMS. Along with the doctors having spent app. 100 (one hundred) hours IN MY BRAIN! I just know it! Sad Mother


kvc33 - January 15

I am so sorry that you have had such a terrible time with doctors and meds. Our 'fibro experts' on this board are Fantod and Noca. I think it is safe to say that you are overmedicated. We need to know what meds you are on and what they are for. Which ones are necessary for your other health conditions and which ones have been prescribed for pain. If a medicine doesn't work for you then you drop it (with supervision) and try something else. Just adding to the list isn't the way to go. Please give us more information. Thank you.


Fantod - January 15

sad mother - Welcome to the board. I used Google and found several things listed in relation to Fibromyalgia in Houston. There is the Fibromyalgia Association of Houston (we can not post links) which you could contact. They have a website and it appears that the group is very active.

I also found three doctors which also see Fibromyalgia patients: Arlette Pharo, D.O. (713) 802-1177, Joel S Hochman MD (713) 862-9332 and Patricia D. Salvato (713) 961-7100. they are all in the Houston area.

Get a complete copy of your medicals records and any recent tests that you may have had done to save time and money. I think that your time as a patient with the Anderson Center has long since passed. A complete evaluation of the meds that you are currently taking and your overall health is needed. Good luck to you and take care.


sad mother - January 15

First off, both of you are so kind to take the time to help me like this! I think we are on the same page as far as being overmedicated and needing to break ties with Anderson. The following is a list of my meds and why THEY tell me I take them...!
Synthroid 137 mcg one a.m.
Baclofen 10 mg twice daily for pain
Zanaflex 4 mg one every 6 hrs for spasms
Topamax 50 mg one daily for ?
Norco 7.5/325 one 3x for pain
Tylenol #4 300/60mg one every 4 hrs for pain
Keppra 500 mg one 4x day for ?
Lyrica 100 mg one every 8 hours
Lyrica 25 mg one every 8 hours
Vitamin D 1000 unit one daily
Nexium 40 mg one at night

OK - there is the list. I am almost ashamed of it. I am really concerned about these waves of heat and sweat that hit me when I think about something of importance, i.e. my problems, my shop that I can't take care of, my bills, my future, life.

I had diabedis insipidus for a few years after my third surgery.

So, I will wait (not patiently!) for some great, intelligent responses for I have not had any help with my situation in a long time which equates to not having any hope. I just cannot figure out why they keep refilling all of this stuff without checking livers, all my hormone levels, etc.

Again, thank you.


sad mother - January 15

I did forget one medicine: I have developed fibromas in my feet along with this plantar fasciatas (sp) and I have neuropathy. They prescribed a topical cream:
every 4 hours to the bottom of my feet.

I pray that is all. If I should recall something else I will add it on.
Thank you for listening and caring.


Fantod - January 16

sad mother - I've made my suggestions which I hope you will follow. You can use Google to look up the doctors I found. Pick one and call them on Monday to make an appointment. Take all of your meds (the actual bottles) to the appointment along with your medical records. Good luck and take care.


Noca - January 17

sad mother - you seem to be on 3 seperate anti-convulsants(Keppra, Lyrica, and Topamax). Are you on Keppra for epilepsy/seizures, Lyrica for neuropathic pain, and Topamax for migraine prevention? Other than that combination of reasons it would seem that you are over medicated in that department. Ask your doctor why you are on 3 anti-convulsants at the same time if that doesnt make sense to you.

At the same time as well as two opioid breakthru pain medications(Norco and Tylenol 4's). In the management of pain, one needs to be on a short acting(breakthru) and long acting medications for pain. You seem to instead be on two short acting breakthru pain medications and NO long acting pain medications. You could raise this concern with your doctor as well if you feel you are on too many medications.


George - January 18

First thing comes to mi mind. Usually FM of CFS patients we are totally healthy, and there is no any blood work, or any test showing any abnormality. So we work in muddy waters.

However if you DO have any specific medical finding work with this firs!

When taking meds make sure that they do exactly what U want... We are so desperate, so we WANT meds to work when they barely do... The docs also feel they did something when they give us prescription... its a strange game... But try it, then go off it for some time and see the difference.

google and wikkipedia all of meds...

Baclofen, is old medicine, addictive. But it also increases hormonal production - testosterone, don t know in what doses...
But certainly you are over medicated.

Lyrica, my doc saz it same as Gabapentin, but its new and it cost $$$$. Their advertising it strange... it seems they only want the draing $ out of it... I do take it


George - January 18

also your name is Sad Mother... I know how how you feel, BUT at the same time just the name alone is... sad.

Wonder do you have a regular spiritual practice? If you have therapist, are you happy with the results. Do you daily meditate and do yoga? Do you go to the gym, sauna? What is your social life... You may be disabled mother but dont have to be the sad one.



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