Seeing a new neurologist next week & IDK how to prepare, and question of symptoms

[Havenlyn]

Hi,

I have had issues for a long time, I'm 35 yrs old. I have not been diagnosed with MS, but I am concerned that I have MS, and having an appointment with a new Neuro Doc next week, I was wondering if anyone had any insight for me.

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.


Symptoms:
Muscles twitch - legs, face, arms, hands, head, eyes

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

Attention deficit

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.

Joints hurt - knees, fingers, wrists, elbows, ankles, shoulders blades, neck, hips, even toes.

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

muscle pain

Bloating

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?)

[doublevision1]

There's another Health Page here that you might find helpful:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Doctor-Visit-PREP---Be-Prepared/show/156?cid=36

[supermum_ms]

I would actually suggest you try joining some of the communities for the conditions that you've been dx with and see if it rings any bells with them, a lot the MS community would possibly find it difficult to speculate on what could be going on, when you have so many dx conditions, which are unrelated to MS.

Cheers.........JJ

[Havenlyn]

thank-you for the replies. It is a lot, and seems to always be getting worse, slowly.... I know many of my symptoms come from Hashimotos.

But within the last 6 weeks there have been drastic changes.
twice now my leg has become numb completely to the point of feeling like dead weight.

Then today, the pain that I have had in the exact same spot for over 2 years, for the 1st time felt even more strange....trying to put it into words.

I was laying down with my 2 year old putting him to bed, and my "spot" it's like a mis-shaped oval on my outer side front thigh... it has been getting bad the last 2 days, instead of being an annoyance, it has started to make standing on the leg incredibly painful.

Back to laying down, just pretend sleeping next to my son, and the "spot" got really warm, then felt like it was a pool of water emptying down my leg???

Never have I felt this before, is the neurologist going to think I'm even more crazy...my list of issues makes me think I am at times. But I know what I feel, and I would never wish it on anyone, I would much rather be pain free having tons of fun running with my kids like I use too, instead of feeling like I'm 100 years old :)

Anyone hear of anything so weird???

[supermum_ms]

Hi and welcome to our little MS community,

Your looking for some insight as to whether what you've been experiencing, could be MS or not and to be honest, I actually think you've just got so many things going on and quite a few uncommon and or untypical to MS, because they are happening all over your body, that I have my doubts that MS is going to be the most likely answer for you.

From what i basically know about your listed dx's (Migraines, Hashimoto's, Arthritis(dx ?), depression/anxiety, Ovarian Cysts, ADHD, cervical stenosis, bulging discs, degenerative) i would think it's highly likely that your sx's would mostly fit into or be related to what you already know of. You've got so much on your plate it's just not fair (!) but 'I' can't see anything in your list that would be specific enough to also put MS on your dx list.  

Cheers........JJ

PS..There is the potential when trying to find the right balance in treating multiple conditions, that if you are taking a few different medications, that there could be an adverse interaction and or medication for one condition causing side effects that worsened one of your other conditions, so it might be worth discussing with your current treating dr, if there is any alternate treatment options available to you.

[immisceo]

There's a great article in our Health Pages on preparing a timeline in advance of meeting with a new neurologist. http://www.medhelp.org/health_pages/Multiple-Sclerosis/The-Importance-of-the-Timeline/show/765?cid=36

This gives you tips about what's the most important to highlight in the likely short time you'll have face-to-face with the doctor.