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I am a 40yo mother of 2 (ages 17 and 12). I had a life long history of dizzy spells and intermittent chest pains (put on nitroglycerin at age 16 - only took for about 4 or 5 years and those medical records cannot be located so do not know specific dx). One night almost 9 years ago, I had a seizure as dx by paramedic and ER Dr but subsequently to by Neurologist no seizures. A few months after that I woke up with numbness in my left hand that progressed up my arm, I later became nauseated, and parts of my face went numb. Called Dr and was refered to ER. Waited over 3 hours to be triaged, told they needed to do CT to rule out Stroke and was sent to the waiting room to wait for another 3 to 4 hours. Didn't do a CT only took blood and gave IV wide open. Discharged and told my potasium was low due to vomit and diareha...I had neither. Couldn't stand unless I walked real fast and when I had to stop to open the door to leave ER area, legs collapsed and I hit floor. Over next few months, had increase of numbness and tingling mainly on left side. Continued to progress over the years to multiple symptoms including partial paralysis episodes. Symptoms mimick so many conditions that cannot pinpoint specific. Have been told it is either one very rare disease or multiple diseases/conditions that are eluding tests. Won't rule out MS but can't confirm. I have been DX with, To name a few conditions: Rheumatic Fever as child Neurocardiogenic Syncope Asthma B-12 Deficiency Fibromyalgia-like-syndrome Narcolepsy Sleep apnea Neuropathies Hypohydrosis Intermittent Arrytrhmia Cognative disfunction depression Unspecified Neuropathic Disease or disorder of autonamic nervous system (cannot confirm dx) Bowel/rectum muscles do not function properly but do not remember dx term Lesions on liver cyst on kidney trace Mitral and Tricuspid Regurgitation and Aortic insufficiency balance disorder arthritus in spine with buldging/protruding discs and tear in one of the discs. Dr convinced me to have hysterectomy last year as a result of chronic nausea and abdominal and pelvic pain (had lost 20lb in 1 month, and another 20 over the next 3 to 4 months). The only thing they could find was tumors on my uterus. After that, I had complications with bladder and increased problems with bowels and digestive system. Urologist told me if there is indeed a disorder of autonamic nervous system, that would cause most if not all of the symptoms that led to the hysterectomy....can you say Freak out frustration??? I am having problems with dr's playing games over what meds to take. One will put me on a med and then the other will take me off that and put me on something else. My problem is that everytime something new comes along or I feel that I am sick, the Dr just blows it off as being part of this unknown mysterious disease. I see a Neurologist, Neuro-opthalmologist, Pain Management Dr, Gastro-interologist, sub specialized Gastro-interologist, etc. I have been through to many tests to count. I am on the following RXs: Fentanyl Vicodine (every third day of Fentanyl patch) Metanx (for B-12 deficiency) Topamax (for neuropathic pain) Zocor (for Cholesterol) Baby Aspirin Transderm Scopolamine (for nausea) Welbutrin Xl (for Depression) Cymbalta (for depression and pain) Nasonex Albuterol Advair Lidoderm patches Azopt (eyes) Yes I have asked if I am over medicated and they just keep adding/changing meds.... Current Drs will even disagree over Test results. For instance, nerve conduction studies....3rd set I had done probably 4 years ago were worse than the first 2 sets that were done, showed actual neuropathies but Neurologist said that they would only rely on the 1st on done 3 or 4 years before that because it was done by an actual neurologist and the last one was done by a technician that does nothing but Nerve conduction studies. My argument, if you were not looking for progression, why would you re-do the tests? Only one EEG and latest stress echo showed abnormalities. Each Cardiologist said 1st EEG must have been done wrong because their's come back as normal. I would love to find a Dr in the Dallas TX area that would start fresh, take a look at the full picture and see what might be able to be done. Any advise/support will be appreciated. |
