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Guidance Needed?!

I am a 38 yoa female. My entire youth was plagued with chronic sickness. By 18 yoa I had severe endometriosis; followed by 5 laporoscopies, a miscarriage, DNC, premature labor of my single surviving child, and by 27 a complete hysterectomy. At 26 yoa appendectomy. At 34 gall bladder removal. At 30 fibromyalgia/clinical diagnosis of lupus. I’ve been diagnosed with a past positive of Rocky Mountain Spotted Fever- probably at 7 yoa- untreated. I have gastroparesis, stage II esophagitis, a nonfunctional LES in my esophagus, hiatal hernia. At 36yoa diagnosed with Chiari Malformation. I had compression surgery, removal of the suspended brain matter, a portion of my skull replaced by mesh implant, and removal of part of my C1 vertebrae. After surgery I nearly passed away twice due to the onset of adrenal failure, Cushing’s Disease, and steroid induced diabetes. I couldn’t walk for 3 months, and was on oxygen. But as soon as I could I went back to work. Two years later no improvement, except due to my extremely strict dietary choices I am on a sliding scale of insulin only reactive to adrenal crashes. A recent MRI has shown four small lesions bilaterally on my frontal lobes. I have herrendous burning pain in my feet and what feels like breaking bones with severe muscle cramping in my legs from the knee down. I have constant blurred vision in my left eye, that minimally clears up a few times a month, but is pretty consistent with my not feeling well. I have been put on chlorazapam for sleep 1mg and I CANNOT sleep still because I am awakened by severe leg pain every single night. I cannot nap to recover. I have anxiety for no apparent reason, bouts of depression, and mood swings I can’t even keep up with - which somehow becomes a physicians sole focus?! I have a habitual metal taste to the point I have to use plastic ware, but I’m not anemic or iron deficient. I get a sharp ringing pain in my left ear, and have a spasm in my right hand (thumb kicks out). I have a spasm that has taken over my right eye, that is noticeable to others, and occasionally the eye droops. When I lay down to go to bed I’ll have a full body spasm. Sometimes when I’m relaxed I’ll have this involuntary gasp for air as if I had stopped breathing unbeknownst to me, and my lungs spasm and gasp for air. It’s somewhat loud and embarrassing.

I feel as though MS is a huge possibility and I’m begging for assistance from my doctors, whom just want to diagnose symptoms with medications. My entire life there have been so many things being proactive would’ve prevented and this is not one in five years I want to be like thanks a lot for treating me like a hypochondriac. Please tell me your thoughts, give me your wealth of knowledge, and advice PLEASE! I am an elementary teacher, mother of a senior, wife- I don’t quit, I keep on keepin’ On despite it all. I’m so very afraid to give in.
Thank you in advance!
1 Responses
987762 tn?1331027953
COMMUNITY LEADER
Hi and welcome,

Firstly let me just say, WOW, you just scrambled my brain with your extensive 'but wait there's more' serious medical list.....what you have gone through, survived and or are still battling is too much for anyone to psychologically deal with unscathed, seriously no wonder you've also been dealing with anxiety and depression, who wouldn't!  

Secondly, you've actually already been diagnosed (dx) with at least 2 of the medical conditions that more closely mimic MS, Lupus and Chari, and then on top of that you've additionally been dx with Diabetes, Cushing’s Disease (anxiety for no apparent reason, bouts of depression, and mood swings!!), under gone brain and C1 vertebrae surgery which are all conditions and or medical situations that will also cause similar-same symptoms that are associated with MS.

The 4 small lesions that showed up bilaterally in the frontal lobes is not suggestive-consistent with neurological conditions like MS, they are most likely non specific micro vascular related and consistent with your medical history or Chari brain surgery. When anyone is going through the diagnostic assessment for MS, one of the criteria's when the MRI and other diagnostic evidence is not suggestive-consistent with MS is that the patients medical history and or an alternative medical condition wouldn't otherwise more likely account for their diagnostic evidence, symptom, type, pattern etc

With that thought in mind, what you are dealing with is honestly more likely associated with your very extensive diagnosed medical history and very unlikely to be caused by an additional neurological condition like MS!

I would strongly suggest you consider connecting with our very knowledgeable and supportive Chari community and or any of the other specific communities you've been dx with, though keep in mind that your medical situation is untypical and a lot more complicated because your dx conditions overlap. I would suggest you try to find the best endocrinologist you can to reassess your complicated medical diagnosis's and provide an alternate treatment plan, as well as find a 'health' psychologist or psychiatrist to help you with your anxiety, bouts of depression, and mood swings and provide you with much needed support and advocacy with what your dealing with.

I truly hope that helps........JJ
2 Comments
Thank you!!! It does help a great deal! I have just been set up with a new endocrinologist whose background is research so I’m very hopeful! He initially felt idiopathic peripheral neuropathy as everything seems so intertwined- minus the Chiari and negative outcome of the surgery itself. Thank you for listening, that is enough in and of itself! I appreciate your advice!
Best Wishes!
Your very welcome, i wish you all the luck in the world that this endo is on the right track and my best wishes in changing your tomorrows........JJ
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