My mother in law just called to tell me that a customer of hers has MS and how my symptoms are just how hers started. I love how everybody but the doctors has an idea of what is going on.
Depression has never been largely one of my problems. I think I can now officially add it to the long list of other symptoms that nobody seems able to diagnose. So I guess I'm here looking for some direction and support.
I'm almost 32 years old and I've had varying symptoms for awhile. Mostly things I didn't think were related to each other but the more I'm learning about neuro type disorders I'm learning just how connected the most different of symptoms could be. I started out with an orthopedic doctor for my issues with my muscles and with pain. My diagnoses include: Femoral neuropathy in right leg and quadricep atrophy, bilateral carpal tunnel, cubital tunnel, right shoulder impingement, and multiple locations of tendonitis including bicipital. I've had IBS for years that was suspected to be Crohn's (and had a positive Serology 7 blood test indicating Crohn's but colonoscopys have shown no direct evidence). I have controlled hypo-thyroidism, and I take supplements for Vitamin D deficiency, and magnesium to help with migraines, tension, and muscle pain.
In 2006 I started having consistent and localized pain during intercourse (Dyspareunia) and had it on and off (mostly on) for years until it spontaneously resolved sometime after my children were born (c-section). I saw several specialists for it but it became less of priority for treatment over the years with other health issues).
In 2007 I had kidney cancer and a partial nephrectomy.
Sometime around then, before, or after, I'm not really sure I started having occasional issues when swallowing. The food would get stuck in my throat. I'm not choking, and can breathe fine but it’s really painful. It's like my esophagus doesn't push the food down. It stays stuck there and my mouth fills with saliva causing me to usually have to run to a sink or (embarrassing when we're out) grab a napkin and try to discreetly spit it out. It usually goes down after a minute or two but it really hurts. (Yes, I chew my food well and this has happened with liquid though it obviously gets through much faster and only has a moment of pain). This has been happening more frequently lately with a greater amount of saliva. I also seem to have gotten clumsy with a cup. When I drink I often spill at my mouth on the right side. A little like my two year olds that are still learning to drink from a cup.
In 2010 I was diagnosed with asthma after chronic shortness of breath but I'm not sure that is accurate because none of the inhalers they've give me have offered any relief when the SOB starts. Around this time I would take frequent walks with my twins in the stroller. I enjoyed the walks though they would cause mild swelling in my arthritic knee. Last summer I had to stop them because as the weather got hot I couldn’t stand the heat. I would feel so nauseas and exhausted that there were days I wasn’t sure I could make it the last block home so I slowly stopped taking the walks altogether. I used to take warm baths and scalding hot showers to help with sore muscles, etc but I can’t take baths at all anymore since I get the same nauseated sick feeling. My comfortable shower water now doesn’t even steam up the mirrors and when I do turn it up for tense muscles I get sick and short of breath. Strangely enough, outside of those circumstances I’m usually feeling very cold and wear a sweater in the house often. I also sleep with a warming blanket on my bed, though if I leave the temperature too high and it gets warm at night I will sometimes wake up feeling sick.
In 2010 - 2011, I started having extreme episodes of fatigue in the middle of the day. Sometimes when it seemed I'd only been up for the day for a few hours and had slept fine the night before. I went to an internist who ran a plethora of blood work, and then referred me to a cardiologist for tachycardia, elevated blood pressure, and mild chest pain, but couldn't find anything other than low Vitamin D. Cardio work up checked out fine, I was put on blood pressure meds that have since been lowered since I changed our family's diet and my blood pressure has done quite well since. Chest pain is thought to be muscular in nature. (This change in diet and switch over to raw milk also has my IBS under control).
I was sent back to my pulmonologist for a sleep study when nothing else was explaining the fatigue. I was found to have mild sleep apnea and given a cpap machine. It seems to have helped but not resolved the fatigue. During all of this I began having increased pain in my hands, rapid fatigue in my shoulders and arms, and weakness. I began to need help getting in and out of the shower, clasping my bra, and because of decreasing strength, motor skills, and pain, my husband cuts my food for me, transfers milk into half gallon containers so I can better pick it up, and opens all bottles for me before lightly closing them back so I can use them while he's at work. Taking care of my kids has become quite difficult and because I can’t take them anywhere by myself safely they stay indoors and watch t.v. far too much! I receive home health with physical therapy 3x a week and occupational therapy 2x a week to help with strength.
During this time I also began getting muscle twitches. The largest and ones that last the longest are in my legs, calves, thumb, and shoulder. Those are quite visible and annoying. Then I have smaller ones that feel like a line of bubbles running under my skin. They don't last long enough for me to see if I can see them . Those have happened everywhere from my foot, my chest, and my groin even.
I’ve always been a semi organized person, but always methodical, and driven when I have a task. I no longer handle the bills because I wasn’t focusing enough and getting them paid. Most of the time I can remember what I had for lunch yesterday but I have to really think about it. I walk into rooms and forget what I was doing. Just yesterday my son asked for grapes and I was searching all over the refrigerator, telling him I was sorry, but I think we’re out, only to have my friend hold a bag of grapes up from the counter saying, “These grapes?”. She’d watched me pull them of the refrigerator before I got down a bowl, only to get the bowl and go back to the refrigerator to get the grapes. Ugh, little things like that make me feel like I’m going crazy.
I've had MRI's of the thoracic, lumbar, and cervical spine - nothing of significance. I've had a lot of blood work done where they were looking for things such as myasthenia gravis, lupus, etc, and even checking for reflexes (or lack of) that could indicate als. My C Reactive Protein HS was elevated but they don’t know what it means.
My neurologist recently referred me to a nerve and muscle specialist after he'd exhausted his resources and performed multiple EMG (showing nothing but carpal and cubital tunnel syndrome, and the femoral neuropathy) but still found my symptoms concerning.
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