Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess gr...
|
mysterious attacks that baffle doctors
|
Watch this |
| View More Posts |
My friend:
Is a woman of 36. Diagnosed with acromegalie in December 2003. Had an operation April 2004: tumor was not fully removed. After that on medication: octreotide = Sandostatine. From November 2005 Pegvisomant = Somavert. In February 2006 she had radio surgery ( gammaknife). Not declared stable / cured. Other pituary hormones regularly checked, still normal. No longer on any hormonal medication. Had in October 2007 her first child: healthy girl. Breastfeeding. The complaint that baffles her doctor is: On and off she has mysterious and frightening attacks, experiencing the following symptoms: Feeling trembling and shaking inside, whereas externally there is nothing to see, a bit like having had a bad fright, without the fast heart rate. This feeling does not diminish in a few minutes. Some times she feels stressed, some times feeble, but always at a reduced consciousness level. As if she may fall down / faint any minute. She experiences very bad coordination: bumps into tables etc., drops things, feels very unsure of her movements. Hunger feelings accompany this. Having a snack can diminish symptoms but only when the attack has not very much progressed. Having a substantial meal during a full-blown attack does reduce symptoms but not take them away. After an attack she feels not well for quite some time and a new attack may come in just two to three hours. What triggers the symptoms and what they are remains indistinct. A lot of “maybe’s” are going around: At first a connection to medication (pegvisomant) was suspected, but she does not use medication anymore and still has the attacks. There may be a connection to an empty stomach, to physical and or psychological exertion. The symptoms seem like hypoglemia, but blood sugars are normal. Etcetera, etcetera. As she never knows when this will strike again my friend feels extremely shaky about herself. Dubious to leave the house, dubious to be alone at home with the baby. If anybody can shed any light on these attacks, experiences them too, knows more about them, maybe even has a remedy, will they please mail me. My friend has given me permission to look for information this way. I am doing this as a service to her as she does not have the energy to do it herself. I will forward your mails to her. I DO HOPE THERE IS SOMEBODY OUT THERE WHO CAN HELP!! bouwienbvz@hotmail.com Bouwien Berkenbosch Assen Netherlands Posted on 02/18/08, 02:02 pm |
| 3 Replies | Add Your Advice |
| View More Posts |
Hi I am so sorry to hear about what your friend is going through it must be scary and making her lose confidence.People will be keen to offer advice and what they have may be not what your friends got.Acromegaly loves to mess around with our bodies it plays some nasty tricks on us its changing our hormones around the list is endless some have headaches,some people put on alot of weight and really have to fight to get rid of it.I have also noticed with acromegaly alot seem to crave sugar.It made my blood pressure go up then drop and I had a few of the symptons you are describing. Mood swings I so love that one before my drug I was the mad woman of my village LOL.What I think may help is a diary I know boring but a diary can tell alot from it,write down as many things as she can it may give a pattern for the doc to see whats going on.Hope this helps a little JJx 
|
|
|
|
||
| View More Posts |
Thanks for sharing your friends experience. Sorry to hear she is having these symptoms. By hearing others stories we discover the diversity of acromegaly. I think one of the things that I am learning right now about acromegaly is that not every one of my symptoms are for sure related to acro... the probelm is trying to determine which ones are and not dismiss any of them. So I think your friend is smart to look for possibilities...so my angle would be if your friend did not have acro what might the doctors think she has...some of her symptoms sound almost pre-siezure like... would it be helpful to do another MRI or ekg and/or some tests for siezures, also some of her symptoms are very similar to "panic attacks", I have heard of cases were people thought they were having a heart attack and felt very faint...finally my mother in law had similar symptoms and it turned out she had heart problems.... while I have thrown out these possibilties I want to caution your friend in putting much store in them since i am not a doctor and even when you hear people's stroies you never know the whole picture so I may not have all the information from my friends right..and so my understanding of their symptoms may be off, therefore my observations for your friend myabe off...hmm do you think acro affects our self confidence???listen to all my hedging..I just dont' want to scare anyone or mis lead you...I wish her all the best and hopfeully someone will be able to shed light..mctrjt
|
|
|
|
||
| View More Posts |
I would like to thank everyone who has responded / is going to respond to my letter. I will forward all suggestions and observations to my friend. She is the one to decide what may be useful to her and what is not. But you can be assured that all sympathetic reactions are very much appreciated.
Take care, keep well Bouwien
|
|
|
|
||
Does anyone know of how you can get assistance with medication cost in the US? I have insurance with a high deductable …
Hi, I was diagnosed with acromegaly in april of 2007 and had surgery in may 2007.. I felt alot better the first few …
Hello. I am Alexandria and i am a sophomore at Williams Field High School in Gilbert, Arizona. I am very sorry to …
