Seeing a new neurologist next week & IDK how to prepare
I have had issues for a long time, I'm 35 yrs old.
I was diagnosed a year ago with Fibro but I'm not on board with that, I feel as though other items are missed, or haven't been looked at.
6 weeks ago I started having really bad tremors that come and go, seem to happen more when I'm trying to fight gravity if that makes sense.
About a week ago I had what I thought was a panic attack, but it doesn't make sense... it was not like others that I have had, I was laying down for a nap, couldn't sleep...my heart started racing for no reason, I tried to ignore, then my chest started to feel tight, heavy almost... sat up and a burning numbness started at my fingers and started up my arm (usually I get it the other way around). When I went to stand, my left leg was numb...but a weird kind of numb. Like the feeling of having a epidural when I had my children...that heavy feeling, so weird. Then it wouldn't work, like I went to walk like I normally would and it wasn't listening to me.
I have a apt with a new neurologist next week, I don't know if I should gather past records or start new so this new doc has fresh eyes, if you know what I mean? I have an ongoing symptom list of mine that I copied and pasted below, anybody else have the mess I do?
I'm frustrated, tired, and ready to give up looking for answers, thanks for any advice or help.
Extreme sudden dizziness - have to sit immediately Happens in all positions - during standing still, standing up, lowering, going up or down stairs, while sitting, laying down
Loss of balance - can be standing and out of nowhere start falling, like my sense of gravity is off
High pitch ring in ears randomly
Things take longer for me to take in, or process than they use to.
Nausea - off and on
Generally feel ill most of the time, like I have a constant virus, gets much worse after any physical activity that I try to push myself to do.
Easily distracted Hard to focus vision and attention on what I should
Forgetfulness - random - mainly short-term, can't remember what I was supposed to do next, why I walked where I did, what someone asked me If I do something more physical, if I manage to do it, I am literally wiped out, possibly for days. Usually the day after every muscle aches and hurts like I have the flu, exhaustion, just sick.
Brain Fog, or not really "here" feeling
Pain in left thigh for 2+ years
Muscles lose strength at times, holding items, can't lift, hold my head up, grab and turn like jar tops, open a pop can, twist a cap off water, etc
Sore throat off and on with being told it's just a virus
Had tonsils taken out at 22 when 1 of my tonsils was swollen for a year straight.
Extreme morning stiffness
Smell of chemicals at times, cleaning items, perfumes, etc make me feel sick and I have to leave the area.
Stiffness standing from a chair, laying down etc
Fluctuate from exhausted insomnia, to sleeping whenever possible, and never feel refreshed, ever. I get better sleep during the day, and have a really hard time sleeping at night.
Light hurts my eyes, some sounds I literally can't handle, a clock ticking drowns out the conversation that I'm trying to hear.
Trying to fall asleep takes a long time, always. Once asleep I wake at times from neck pain, massive leg cramps, legs jerking, just pain.
Random Utter exhaustion, hard to lift head, just can't.
Migraines: diagnosed at 23? But for the last year there has been an huge increase, they come on suddenly instead of gradually, especially after standing up from chair or floor or climbing stairs
Arthritis - knees, neck, possible hands,
Neck is in chronic pain and has been for years, worsen by any lifting, pushing, pulling, looking up, looking down, looking to the side, register, hanging items, extended computer work. To the point where I finally said I can't, and had to leave my job that I loved.
Neck can't move like it's supposed to (range of motion)
Knees - painful, ridged, grind, can't bare weight very long, can't stand or sit in one place for long
Neck locks in place - very painful - have to break the lock to stop pain and make it get out of locked position
Hands lose flexibility to move randomly, slightly curl up at times, drop items at times without letting go,
Right shoulder pain and loss of movement, extreme burning at times, left shoulder just recently started burning pain
Ice cold feeling in neck, like a fast forward of water freezing over, hair feels on end, a shivering feeling but only going up from the base of my neck to the top of my head.
Right elbow locks at times, painful, need to break the lock to make my arm work.
On and off Numbness in fingers, feet, lower extremities, pelvic region, lips, part of face
Leg Cramps in calves, really bad, they will seize up and it's excruciating pain until my husband can flex my foot back towards me. If I'm by myself I have to push my foot against something as hard as I can to get my foot to push back towards me.
shooting pain - Sharp pains randomly, burning pain that makes me clench my teeth until I can get through it. Hands, fingers, middle of feet, top of feet, knees, down back of legs, wrists, arms, neck,
Pain in eyes, having to push on them hard until it goes away
Recovery from anything, sickness etc, takes a really long time.
Vision - focus goes out and in at times
abdominal pain off and on for years
Out of the blue sweating episodes
alternating diarrhea and constipation but mostly constipation
Uncontrollable trembling - head - hands - all over body (Just started 6 weeks ago)
Painful bowel movements - in stomach area
Hard to handwrite or type - painful after a minute
Delay in urination - without any infection
Urgent need to have a BM or pee
Can't have BM/Pee at times when I have that urgent need, almost like numb or frozen when I can't.
Constant need to stretch muscles- so much sprained my own ankle
Hurts to drive, ankles, knees, neck, back
It's like my body can't regulate temperatures right.
Weather changes affects all muscles, and depression, skin hurting, breathing hurts outside during summer and winter.
Hurts to be in the sun or cold.
Just my pinkie fingers will get ice cold at times, or a toe here or there, or my right hand and not my left hand.
Skin hurts when touched at times
Skin feels almost too tight on my right foot at times, causing a electric shock pain
Panic attacks - chest gets heavy, harder to breath
Hashimoto's - Auto Immune Disorder diagnosed 10-08
Fibromyalgia - diagnosed 3-2012
Ovarian Cysts - multiple, a few have ruptured, 1 had surgery on
ADHD - on meds,
Depression - on meds
Neck - cervical stenosis, bulging discs, degenerative
(gathered info from records, but neck doctor was concerned, saying my cord wasn't effected?)
I am sorry to hear about your medical problems. Yes, fresh eyes and insight in your case would help but the new neurologist would ask a detailed history and ask about your medical records.
You probably suffer from some form of inflammatory bowel disorder like IBS, Crohn’s, celiac disease or some food intolerance which is causing your gut related symptoms. This could be precipitating electrolyte and nutritional deficiencies which could be causing other symptoms.
Since you have Hashimoto’s other autoimmune disorders should be looked into. Since you have polycystic ovary, there could be hormonal imbalance that should be considered. Please consult your PCP regarding this also and go over all these possibilities to assess whether you should also see a gastroenterologist. Hope this helps. Take care!
The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.
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