• 10 days ago

    Can anyone relate?

    I am 33 yrs old. My body is getting worse every year (usually around this season). My mom was diagnosed with MS in the 90's but hers is not progressive. I have seen multiple doctors for multiple things and no one knows what's wrong with me. I'm not a hypochondriac and believe that all of these things are related, not separate problems.

    Everything escalated in 2011 when I was diagnosed with optic neuritis. I had just had my son (4th child) in Sept of 2010 before experiencing a 6 month localized headache. After 6 months of suffering from the intense pain in my left eyebrow, I realized I could touch it and trigger the pain in a specific area. My doc gave me a low dose steroid and it went away eventually. Around this time, I began experiencing sensations of water dripping on me...like water dripping on my arm or the top of my foot. I'd go to wipe it and there was nothing there.

    2012 began the "pulling" searing pain in my neck (down into my back), the tops of my hands and the tops of my feet. At random moments without warning, it feels like an electric shock sensation "pops" and is followed by a hot sensation. Sometimes it feels like a tendon gets "hung up" and snaps. It's frustrating esp when I'm driving and just "looking both ways" or turning to talk to someone. I go through several months with no episodes but typically when they come back, they are frequent, unpredictable and last a few months. That same year, I lost all feeling in my right hand - my pinky, ring finger and half of my palm up through my thumb - which felt like pins and needles half of the time and a dead hand the other. I also started to experience my left hand falling asleep. I could not grip a pencil to even write like normal. I also had a very hard time going down steps because of my knees. My doctor ordered a CAT scan of my head to see if there were legions. It came back mostly clean with the exception of one spot which was inconclusive. I was referred to a neurologist who did nothing for me (he barely spoke to me, just pulled on my arms, banged on my knees and I left). He ruled out MS because I could touch my chin to my chest without triggering any pain. By this point, they decided my hand issues were probably carpal tunnel. The feeling in my hand began to return after a year. For the most part, most of my symptoms were gone.

    Come Fall the next year, they returned along with very irregular and heavy menstrual cycles which made me anemic. in 2014 my bladder problems began, along with mild digestive issues. I began getting UTIs quite regularly despite my efforts to avoid them. These moved quite quickly into my kidneys, hospitalizing me with a double kidney infection and potassium deficiency. My doctor ordered a cystoscopy to make sure I was able to completely empty my bladder. Everything came back normal.

    At this point, everything began to occur at the same time. The pins and needles in my limbs, twitches and spasms in random places including my face, back, legs, and hands; numbness, bladder infections, stomach problems, shocking sensations, joint pain. Then, they'd subside for months.

    Last year, I developed a very stiff neck and sciatica in both my neck and lower back...sometimes at the same time. I thought I had just slept wrong but a year and several chiropractic adjustments later, it's still stiff and painful and I don't have to be doing anything for my sciatica to flare up. My husband and I were in the store one day and my sciatic nerve in my lower back sent a searing sensation that caught me off guard (I wasn't moving, just standing there talking) and my husband caught me as I began to fall. 2016 I began struggling gripping with my hands again. My doc ordered a test for arthritis which was negative. Only days later, I was sitting on the couch when my right thigh and calf muscle cramped immensely causing me to jump up and I couldn't walk...the calf felt like it could have been a blood clot, which scared me and concerned my doc so she ordered an ultrasound of my leg. It came back fine. That September, I was exercising like I always do and 2 days later, both of my wrists felt fractured. My left wrist healing within a few months while my right wrist got worse, sending me yet again to the hospital. Xray showed no break but they couldn't rule out a hairline fracture. My right wrist is still sensitive and requires a brace from time to time, especially while I sleep.

    I began getting very sick every time I would eat and became severely constipated regardless of how clean my diet was. I have never struggled with irregularities at all. My doc referred me to a gastro doc who diagnosed me with IBS and introduced me to the FODmap Diet. This diet cuts out fermenting foods to avoid bad gasses in the stomach. This helped but did not correct the constipation or fullness. To this day, everything I eat won't digest properly or break down. I eat no dairy, no gluten, very little sugar or starchy foods and only drink water. I even tried a 15-day colon cleanse vitamin and couldn't use the bathroom at all by day 4 and the cramps were unbearable.

    This year has been the worst. I now suffer with all of these things plus bladder and bowel issues and can't eat anything without getting sick. Within the past few weeks, my face "contracts" (tightens starting in my nose then intensifies over my whole face from my nose upward and subsides) and I can't put my head down too far without experiencing an electric shock sensation shooting down my neck to about the bottom of my shoulder blades. At random moments lately, my whole back tightens and I can't move until it subsides. It feels like an intense "contraction". I recently developed neuritis again. My continued menstrual problems led me to an appointment with my gynecologist. She did an ultrasound to find that my uterus is flipped and I have a fibroid tumor which is causing the anemia and heavy bleeding. She said the constipation is a result of my uterus putting pressure on my rectum so she scheduled me a hysterectomy but I am going to cancel it on the advice of my family doctor. He says a uterus cannot cause that kind of restriction.

    I'm the lead singer of a rock band. On the last 2 shows of tour in September, I forgot my lyrics in the middle of the songs. During both trips, there were bouts where I was trying to talk to friends or fans and knew what I was trying to say but I couldn't get my sentences right or think of some of the words. It became so frustrating that I stopped talking altogether.

    I had a really rough trip to a particular festival in September. I pretty much stayed in the van all day until we performed that evening. I had a burning sensation in my stomach, couldn't walk a straight line (dizzy, fatigue, loss of balance....but I didn't eat much that day due to stomach upset). I took 6 tums, 2 gas-x pills and an over the counter nausea medicine that day..nothing brought relief. It resolved on it's own after 3 days.

    Yesterday morning, I woke up feeling like my gut was on fire. I couldn't wait for my husband to come home so I drove myself to the ER. The pain intensified and subsided every 5-10 minutes and made me very nauseous as well as sending a searing pain through my lower right back. This went on for 6 hours and I literally wanted to die...or cut my stomach out! They checked my blood and urine, did an ultrasound of my gallbladder, pancreas, liver and kidneys. Everything came back fine so they concluded that it's probably just the IBS.

    My doc is ordering a scope to see my stomach and check for celiac, ulcers, crohn's etc. It very well could be one of these things. I came home from the hospital yesterday and experienced loss of bowel control. I soiled my pants and didn't realize until it was too late. I did the same thing this morning which is why I decided to post here. I'm so embarrassed but desperate for answers. I have been constipated for a year and now I have diarrhea (which could be a side effect of the IBS meds they gave me. But, my doc said it would take 2 weeks to take effect...it had only been 2 days).

    Obviously I don't WANT a disease of any kind! But I'm tired of going between different specialists to be told there's nothing wrong with me. I want answers so I can start an effective treatment plan. I'm 33 yrs young and this has only been effecting me for 6 years...I want to get ahead of whatever it is. I have 4 kids who depend on me and I've always been very active and lead a healthy lifestyle. Thank you for taking the time to read my story and give any helpful advice.