Over the course of the next year, I seemed to be fine other than my vision remained "dark like", and I started having trouble reading printed words. It was October 2012, and I was feeling run down and weak again, with numbness in my hands and feet, and I started having double vision. I started seeing a different PCP, an Internist. He said this might be a very long road to find a diagnosis, but it sounds a lot like MS. He said there were a lot of things that need to be ruled out before a diagnosis can be made so he started the path of testing......
- Routine blood tests
- Heavy Metal Tests
- Thyroid Tests
- Tumor Markers
- Vitamin Deficiencies
- Hormone Testing
and specialists...
- Gynecologist- "Estrogen Dominance could cause all of these problems, but all we can do for you is give you a shot and put you into Menopause to resolve it."- now that is something a 35 year old woman wants to hear!
- Endocrinologist- "Your labs from your PCP look perfect and he did a thorough job, I only want to add this adrenal test. But otherwise you are clear of anything endocrine related."
- Neurologist #1- "Everything checks out, but your migraines could be causing this problem. Just to be safe I would like to have you do a Visual Evoked Potential (VEP)." The results were normal. He didn't have anything else he wanted to see me for.
- Ophthalmologist- He tested me for glaucoma, He also said that he wanted me to see a Neuro-Ophthalmologist.
- Neuro-Ophthalmologist- He ran test after test and concluded that I do not have Optic Neuritis, and that my vision problems were related to Convergence Insufficiency, and I have severe dry eyes. He prescribed me Restasis which I still currently take. He also said it was necessary for my migraines to be treated and monitored by a Neurologist. He referred me to a neurologist.
- Neurologist #2- He tested me for Myasthenia Gravis, which came back negative. Then he prescribed me Butalbital. I started having trouble lifting my head, swallowing, and I was passing out with exertion. He immediately checked me again for Myasthenia Gravis, and then referred me to a Cardiologist.
- Cardiologist-He did a Echo cardiogram on me, and he set me up with a 1 month long heart monitor. He told me that I had the heart of a 20 year old and I was in excellent heart health. But he did tell me to stop taking the Butalbital, because it was lowering my Blood Pressure too severely.
- Allergist/Immunologist- (Over the past 6 years years I was continually suffering from seasonal allergies, and I was becoming so severely allergic to fish that I cannot even be in the same room as someone cooking it, or have any food fried in the same oil as fish, it was causing my throat to become inflamed and my digestive tract too.) They did a complete allergy test on my and I even had a pulmonary function test done on me as well. The findings were: Severe Allergies to Ragweed, Pollen and Grass. Slight intolerance to dairy, I am Atopic and I have Allergy induced Asthma. I was put on Flonaise, Ventolin, and Fluticasone.
- Neurologist #3- Still looking for the right doctor to take my symptoms seriously, this one wanted to only treat my migraines and look no further. She gave me Elavil to take daily, she also told me to take a riboflavin and magnesium supplement, plus she gave me Relpax, for when Migraines do hit. My migraines went from 2 a week to 1 a month. But my Restasis wasn't able to relieve the dryness in my eyes and I was sleeping more than I was before this was making some of my intolerable symptoms even worse and the neurologist wasn't willing to look any further with my other symptoms.
- Neurologist #4- I got a recommendation from my Allergist about a thorough doctor who is amazing for migraines and has a reputation for not leaving any stone unturned. This doctor is a lot different then most doctors because he is an anesthesiologist as well. On my initial visit he did a EMG/NCV a lot of blood work and a spinal tap. He found that my ANA test was positive, but there was no sign of MS in my spinal fluid. I was told I had Raynaud's Syndrome, Cervical Radiculopathy, Peripheral Neuropathy, Ptosis, I am Hypermobile and I have Insomnia. This doctor sees me every 4-6 weeks since May 2014. He is still searching for other things while he is treating my migraines. He referred me to a Rheumatologist for the positive ANA, Physical Therapy for my neck pain, and a Sleep Study Clinic to help with my insomnia. After my PT episode, I had a neck MRI done and it was inconclusive. I had a skin biopsy test that showed Small Fiber Neuropathy in my calf, but not in my thigh. Elevated ANA's again and B-12 deficiency. Gluten Free diet trial for 2 months (April-June).
- Rheumatologist- He did further testing, and diagnosed me with Fibromyalgia, but he ruled out Lupus, Rheumatoid Arthritis, and Diabetes. *Note: Neurologist #4, doesn't believe in Fibromyalgia as a diagnosis, he has chosen to proceed with other avenues, I agree. I tend to think Fibromyalgia is a garbage can diagnosis, " We cannot figure out what your problem is so, we will just give it a name to make you go away".
- Physical Therapy- I started in January 2015, I was going twice a week, 1 day exercising, 1 day massage therapy. Within the first week, my neck pain became so severe that I was losing my balance (not vertigo) and my eyes were so uncoordinated that I couldn't drive, or move my head. I went to the ER! This was so frightening, I was running into the wall and tipping over because I was so off balance, not to mention the memory loss I was experiencing out of the blue. I continued with PT for the rest of the month, I just couldn't take it anymore, I had a headache for the next 2 months that wouldn't go away. It is now April and I am finally not having a headache everyday. But when I do turn my head just right I still get sharp pains in the sides of my head.
- Pulmonologist- Still waiting to go have my sleep study done, along with latent test the next day. (May),
- Geneticist- Appointment in July, to check for specific Breast Cancers, MS, and others.
My Symptoms to this date are:
- blurry vision
- double vision
- "dark vision"
- headaches-from missing a meal, or pushing myself when I am getting weak.
- severe neck pain
- tingling/ numbness:
- face
- hands
- arms
- legs
- feet
- loss of balance
- brain fog
- memory loss (in the middle of conversations, without distractions)
- fatigue
- times of such fatigue I doze off or almost doze off: if I do attempt to read a printed item; during meals; during TV shows; driving or riding for short car trips; at work.
- weakness:
- hands
- feet
- legs
- arms
- neck
- jaw
- insomnia- I fall right to sleep but after 1-2 hours I am awake trying to make myself fall back to sleep.
- heat sensitivity- heat causes such severe weakness I have trouble moving in bed, or getting out of the tub, or if covered up getting up from the chair or couch.
- cold sensitivity- especially on my neck, it causes instant headache, but on hands and feet it can be excruciating in the winter to just walk out to the car.
- Joint pain, mainly in hips and knees, when walking while weak, or sitting a long period of time.
* Note: I have these symptoms on and off. I can walk unassisted, and I am able to take care of myself and family sufficiently enough. I do get a lot of assistance from my 2 older daughters with a lot of the housework, during my "bad days".
So needless to say it has been a long road, and I was really hoping this year wouldn't be filled with doctors appointments and testing. Well there goes that plan, right?
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