Atypical Malignant Hyperthermia - Rare Disorders Message Board

MichelleG · 06-26-2003, 09:31 AM

Is there anyone out there that has Malignant Hyperthermia and experiences daily muscle contractures, headaches, muscle weakness and fatigue? My whole Maternal family has been DX with having MH, we all at some degree suffer from these symptoms. We have had all the tests you could think of but they have come up neg. My Mother, Aunt, and 2 cousins have been given a Fibro DX, ( which is not supported by tests) and I have been given the label of Myotonic Dystrophy. This too has no supporting evidence.(I have had 2 EMG tests that came out neg.)
Is there anyone else out there???

zuzu8 · 07-04-2003, 05:15 PM

Hi Michelle- I'm sure you've researched this to kingdom come but the following is a great link (pre-approved for posting here by HealthBoards moderators) to MEDLINE, sponsered by the Dept. of Health and Human Resources and the National Institutes of Health (NIH in Bethedsa, Maryland)....

It's a fantastic resource for just about everything to do with diseases, (rare and otherwise), drugs, clinical trials, med libraries etc.
It takes some navigation but maybe you'll find some info you haven't seen yet.

When you get there, click on Health Topics and type in malignant hyperthermia.

On the next page, scroll down a bit to the heading "Anesthesia" under which you'll see "malignant hyperthermia"....Click. Next page may be VERY helpful.
[url="http://www.nlm.nih.gov/medlineplus/medlineplus.html"]http://www.nlm.nih.gov/medlineplus/medlineplus.html[/url]

zuzu xx

[This message has been edited by zuzu8 (edited 07-04-2003).]

BarbaraH · 07-07-2003, 12:38 PM

Hi,

I'm a nurse, and a former ER nurse, so urge you and each family member with a Malignant Hyperthermia diagnosis to have a card in your wallets alerting emergency personnel to your diagnosis. Patients who come into ERs sometime cannot speak for themselves and sometimes need emergency surgery. Your wallet emergency information or a Medic-Alert bracelet could save your life because your doctors and nurses would know to take all the precautions to keep you from a MH crisis.

Good luck getting the other information you seek. Barbara

MichelleG · 07-07-2003, 01:14 PM

Thank You ZuZu and Barbara for your replies.
I have the information that was on the Medline pages, and I also wear a MedicAlert bracelet. I know that the Doctor's ONLY consider MH to be a problem in the OR. This is wrong! In European tutorials they believe that these episodes can be a daily occurrance for some MH patients. Not to the degree of having a full blown reaction, but on a slightly different plain. I and my maternal family suffer from daily muscle contractures. I was on Dantrium for 1 1/2yr. with no relief. (600mg/day) I have no other supporting evidence that I have any other muscle disorder. All I have is a Positive Diagnosis for Malignant Hyperthermia. My quest is to find other lay people who suffer the same as I who have been told that it's all in their head, that there is no way that this can be related to MH.
Barbara,... were you ever told to be very careful in administering Asthmatic Treatments? They contain Epinphrine that can bring on a reaction. My 8 mos. nephew flat lined in my arms because he was given 3 treatments back to back with no regard to my pleading for a medical personnel to watch over him. Thank God for my medical back ground, I revived him myself on the crash table with the Nurse's wondering why he had crashed. Again I looked at them and repeated what I had said ealier. Epi.- will, can bring on a reaction. It's these little things that I fear the most when entering the Hospital. I feel safe in the OR, it's other areas that I don't. The General medical public have no idea what the causes can be. I'm not sure if it is taught or if the deciding head has decided that it's just not needed info to be handed out. For all those times that a person has come into Emerg. with a mystery fever - possibly they are a MH patient that has had some sort of trig.
I don't mean to sound scolding, but I'm just very tired of being told that I know nothing about my body. I have gone into Emerg. with my neck in such a contracture that I can not sit stand or lay down. It literally is sitting on my shoulder. I'm told that I had to have done something for this to happen. Again I tell them NO it just happens every once in awhile. Why do I have to constantly prove myself? If you have an interst in MH I suggest that you go to MHAUS.org there you can read all kinds of letter's from lay people who have MH and complain about the same ailments as I. If there are so many of us, then why can't the Doctor's give in, and look deeper into this Rare Disorder?
Thanks for listen