Another limboland kid (sorry...long)
 

Hello everyone,

I'm Christina, a 23 year old girl from the Atlanta area. I'm with a wonderful man from England who I've been with for over 6 years and recently got engaged in Jan. He proposed while I was at my sickest. :holysheep:

I'm not sure exactly what's going on with me and have had some mixed reviews from doctors.

If I sit and think back to how long ago I started having issues...it was likely when I was 15. I was told I had mono (even though my weekly blood tests were inconclusive, inconclusive, negative) as my mom had just tested positive for EBV. I was very weak, slept a lot and had difficulty walking unsupported. I can't remember a lot of what all went on there but I know I was sick for quite a few months.

Another 6 months later I had another bout of what I thought was mono again. Negative...

Eventually my Dr just told me I never had mono and I was just depressed :eek: This being the same one that told me a year ago I was too young for Fibromyalgia without listening to me.

At 18 I lost my health insurance and stopped going to the doctor. On and off for the past couple years I've gone through phases of random extreme tiredness, trouble walking, extreme tightness in my calves, knees buckling, etc. I'll go into the symptoms more below.

Since about August 6, 2010 I've gone through another one of these "relapses". Induced by what I believe to be a large amount of stress. This time I got EXTREME NAUSEA. I can be nauseous constantly, or after eating, any motion (driving, passenger or just sitting and watching people walk around me)

My calf muscles got so tight and there was nothing I could do to get them to relax. In tears and up all night. After several days of this I started using a cane to support me walking. This came with buckling knees and heavy legs. They just felt desensitized. I know that my legs are there...and I can feel them about 40% (yeah?) but they just don't feel like mine anymore. I'm terrified of falling.

I started martial arts as a very young girl (4) and have been in it for many many years. I was even instructing at 13. Since around when I had my mono episode (15) I've had to basically stop. I'd get back out when I was better but other than that...as of the past couple years... I haven't done anything. I used to have perfect balance...now I look like I'm drunk. ...and I don't drink.

This is getting boring now...anyways. Here is what I'm dealing with and doing:

• August 6th, 2010 - "Relapse"
• August - PA appt. gives me 50,000iu a week of Vitamin D (makes me extremely ill..had to stop after a few weeks) also gives me a 6day pack of prednisone says it'll make me feel like a million bucks.. did nothing - she mentions getting a "brain scan" and also MS & Myasthenia gravis
• Sept - PA sends me to a nephrologist with kidney pain issues
• Sept - Nephrologist sent for ultrasound & more bloodwork
• Sept - Nephrologist found 3mm kidney stone
• Nov - back to PA with severe kidney pain turns out i'm passing the stone
• Nov - day after thanksgiving after 5 days of feeling like death..passed the kidney stone
• Nov - Rheumatologist appt. - hardly listened to me. They had more bloodwork done and I have yet to get it. Not going back there. She mentioned myofascial pain syndrome
• Dec - speak to homeopathic dr. he mentions fibromyaliga and/or early onset MS
• July 2011 - Herbologist - she works with me and gets me on a bunch of stuff. Including taking B12 daily, magnesium, etc. Tells me to see a neurologist but says something is up with my CNS
• Oct 2011 - Neurologist appt. made

I'm possibly missing some things there.

Some symptoms:[LIST][*] Severe Nausea[*] Dizzy/unsteadiness[*] Tight calves[*] Buckling knees[*] Desensitized/numb legs[*] Fatigue (usually around 3-7pm - one minute I'm wide awake..the next I'm asleep)[*] My left eyelid will twitch...and sometimes I end up getting a gray area on the left side of my left eye. Most noticeable at night when I can't see out of the left side of my left eye. Saw an eye dr. Nothing :\



Tested for:

• CBC (8-11-2010)
• Platelets & Aut Diff (8-11-2010)
• SED Rate Erythrocyte (8-11-2010)
• Vitamin B12 (363 on 8-11-2010)
• Folic Acid Serum (8-11-2010)
• Vitamin D (23 - was put on 50,000IU a week) (8-11-2010)
• Metabolic Panel (8-11-2010)
• Rheumatoid Factor-Quant (8-11-2010)
• Uric Acid blood (8-11-2010)
• TSH (8-11-2010)
• C-reactive protein (8-11-2010)
• ANA cascading reflex (8-11-2010)
• Lyme Disease (8-11-2010)
• Sjogren Antibodies (8-11-2010)
• Iron Binding capacity (8-11-2010)
• Ferritin (8-11-2010)
  
• ANCA Panel (9-22-2010)
• Scleroderma (9-22-2010)
• Diagnostic profile (9-22-2010)
• Sjogren Antibodies (9-22-2010)
• Anti-SS-A/-SS-B (9-22-2010)
• Anti-Jo-1 (9-22-2010)
• Complement C4 (9-22-2010)
• Complement C3 (79 low) (9-22-2010)
  
• CBC/Diff (8-12-2011)
• Prof 1 (8-12-2011)
• Lip Eval (8-12-2011)
• TSH (8-12-2011)
• HGB A1C OP (8-12-2011)
• Ferritin (8-12-2011)

Nothing came up alarming them. Said I'd just have to see if something changed as I had too many symptoms when I initially started seeing them. The PA was horrible at following up and eventually left her job (without anyone notifying me ...I had to find out through my fiance's mother. Now I know why I didn't get my last follow up) to continue writing.

The herbologist is very helpful and I hope to continue with her after my neurologist appt.

Thank you for listening...

Since I messed up my list in the first post...


I forgot to add (haha)

Cognitive issues
Muscles spasms (random muscles twitch along my legs and sometimes my arms...sometimes it feels like some big worm is crawling around)


..and I'm sure some other things :(

Have you seen a Neurologist that specializes in MS? That would be my first suggestion. There are specific tests an MS specialist can do to eliminate certain conditions from the list of possibilities.

Vitamin deficiencies can cause many of the symptoms you've described. You'd probably need to be tested to see what you're lacking in. I take Vitamin D3 (10,000 IU daily) and it has helped me alot. I also started B12 (needs to be Methylcobalamin) at 5,000 mcg. daily. This needs to be taken on an empty stomach otherwise you won't be able to absorb much of it and it will be pointless.

There are just so many conditions that present with the same symptoms as MS does. MS is a hard condition to diagnose and all of us have different and varying symptoms. Some are affected visually while others have difficulty walking and balancing. And some of us have a little bit of everything! :rolleyes: The longer you read and post here the more you'll see that even though we all have MS we're all affected by it very differently.

Welcome, Monkey! Sorry for your health issues, but glad you found us!

I hope your new neuro will LISTEN to you and be HELPFUL. Those darned docs who take our $$$, but don't give us anything in return are just lame. :mad:

I do hope you'll continue to post and get acquainted with the good folks around here. This is a nice place to be for help and support.

Make sure you give us an update after your appt., k? :hug:


Oh, BTW, who's Mr. Wonderful and when is the wedding date? :)

I haven't. I've just been told to see a neurologist so I made an appt. with one locally. Vitamin D (50,000iu a week) made my symptoms far worse than they are (so does heat though :\) so they PA took me off of it. I've been taking B12 3,000 mcg daily under the tongue on an empty stomach for a few months now. This was prescribed by the herbologist.

I did read a lot of threads the past two days..and somehow made it onto page 82. I can definitely see that everyone has their own "quirks" as I like to call it

Thank you :)

Oh gosh, yeah I was sooooo ****** about the rheumatologist. I just got the bill several months later...made me even more mad.

I'll do my best. I'm usually pretty active in forum communities and have administrated some forums with around 80,000+ members before :eek: so if I find a place I like, I'll stick around. You all seem pretty great and active. Other forums about MS seem to be pretty quiet. (last post august 2010 :rolleyes:)

Will do! I'm really quite nervous :(

Mr. Wonderful moved here from England in 2007 because of me. We're hoping next august but because I've pretty much lost my job recently and can't really work anywhere else with my health...well it costs a lot to get married. I feel bad for him though and have given him the option to leave many times...he's watched me go from a very active and healthy girl....to one who can't go out anywhere and is stuck inside. He'd just hold me close and sing "Just the way you are" by Bruno Mars. Of course I'd start bawling...but while I was my sickest he proposed. I know he loves me...

sorry you are having helath problems, reagrdless of what it ends up - limboland sucks.
Congra on being engaged. You are both lucky to have found someone who completes you!

Thank you very much! :)

(((Monkey))) I'm sorry you are going through all of this. Sometimes it takes a while to get a definite dx of not only MS but other conditions/diseases as well. Hang in there and be persistent. Let us know how it goes with the Neurologist.

BTW - Hang on to that man. He sounds like a winner.;)

Thanks tkrik. It has been a long road and many years of suffering with no answers. I'd just like an answer...so at least I can start to move on. Not having an answer sucks. I'll let you know :) I might possibly try and get the appt. bumped up...things aren't going so well for me right now :(

Thanks, I will. He's my everything. :)

Anyone ever go into the chat? I've been in there since I joined but it's mainly filled with people from the psychcentral area...not NeuroTalk :(