What do you think? MS or.....???

[MandyLynell]

I'm a very proud Mommy of a 3 year old little girl Peyton she is my heart and soul! My reason for living!! I've been living in pain since I was young and now am in some kind of pain everyday. Mostly my legs, which have bothered me since I was very young and every Dr. has dismissed it as being tired or nutrition. They also said my stomach pain Ive been feeling since I was 9 was only a ulcer or GERD come to find out almost 10 yrs later I have Crohns disease. I also have this extremely annoying tingly numb area across my back that has always been ruled out as a simple pinched nerve, well an MRI later....showed I fractured my T10-12 and have bulging disc L2-5. The pain in my legs is the most bothersome because it seems to be there all the time. Its a dull ache from the top of my thighs radiating down to the tops of my feet. When its bad it is more like a headache like throb throb throb and will radiate up the sides of my hips across the small of my back and down into my tailbone even sometimes making my pubic bone ache. It is not Sciatica because it presents the same on both sides and is on the top on my legs not the back. The pain also seems to be more intense in my knees, ankles, and the tops of my feet Lately I have beening twitching a lot even having episodes so badly I have to sleep on the couch becasue my boyfriend cant sleep otherwise and have even twitched hard enough to throw myself onto the ground. The right side of my face especially around my eye twitches quit often especially when Im stressed. For about 3 years I have had the sensation in the back of my throat as if I have a bunch of flem and cant swallow even so bad at first I would stick my finger in to try and pull it out but there was never anything there. Im pretty used to it now. I just started about six months ago fumbling over my words even though I know what Im trying to say but it just wont come out right. And just recently when Im talking the back of my throat spasms and makes a weird like half burp half gag half growl sound lol sorry its really hard to explain in writing. Around the same time I also noticed this feeling as if my brain had fallin asleep or kinda like it was bouncing back and forth on my skull. Its strange and when I try to explain it it is so irritating because everyone just says "Oh ya I hate head rushes", its NOT a head rush. I noticed it a couple years ago happening only when I would forget to take my antidepressant(Zoloft) for a couple days so I just pushed it off on withdrawl side effects until six months or so ago when it started happening when I hadn't missed them. Even like a feeling of my brain spinning really fast and when I have these episodes if I move my eyes too far to the side it brings them on more strongly. I usually get kinda sick to my stomach too. When they happen I just close my eye and put my head in my hands and it goes away. A couple times I had it to the point where I was unable to drive. And was in bed most the day with my eyes closed because thats the only thing that helped was keeping my eyes still. My doctor doesnt know what could be causing it and ordered a EEG, maybe thinking it could be small seizures.  Also, just recently I starting getting these burning/stinging quick zap sensations on different areas of my legs. I smoke cigarettes and it feels exactly like it does when I flick and a couple ashes land on my fingers and burn them. Just a split sec burning feeling. At first I thought that was it I must have ashed and some land on my legs cuz its been summer and when I noticed them first I was outside in shorts. At first I didnt even think twice about them until I started noticing them when I wasn't smoking Also, lately my concentration is limited and my thoughts are very unusual for me like Im uncertain and undesisive about everything its very strange and I cant stand it. We both have Fibromyalgia as well which does share a lot of symptoms with MS but obviously not all because they are two seperate diseases.My Mom has very similar pain issues and has psoriatic arthritis. So we both have Autoimmune diseases and think our symptoms that dont fit our dx's must have some explanation and it seems MS is fitting almost all of them. What does it sound like to you guys? Thank you very much for your time!!
Amanda(I'm 27 I dont know if that matters)
PS. Sorry if it sounds unorganized but this started out to be my "a little about you" part of my registration and I just decided to post it as well and get everyones thoughts about my symptoms.

[Ricobord]

You sound like a bad case of late stage Lyme Disease, and possibly also a coinfection called Bartonella. They sometimes mimic MS. Many cases are also misdiagnosed as fibromyalgia, as all the symptoms of Fibro can also be caused by Lyme. There is plenty of Lyme Disease carrying ticks in Oregon, but doctors in the west don't realize that from Northern California up to northwest Washington along the coast is a hot spot for Lyme. You could easily have gotten it as a child and have suffered varying degrees of symptoms since.

There is a fairly thorough symptom list in this document that you can look at. You have a lot of them.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

You need to find a doctor who knows how to diagnose it, or exclude it. Most doctors aren't aware that it can be as bad as you have it. Try an Oregon Lyme support group to see if they have any suggestions for you.

Steroids make it worse. Magnesium supplements (also epsom salt baths) and B12 injections (or sublingual) can help you feel a bit better.  You are welcome to post on the Lyme forum if you'd like more info.

[SarahL2491]

I'm with JJ
I had to read it in sections, using an index card and reading it more than once to get thru it.

You might poiint blank ask your  neuro but I don't think you have MS either, there are over 20 mimic diseases that cause the same symptoms.  He can run the numerous blood tests involved.

MS is not an inexpensive disease and I truly hope you do not have it.  I went thru RN school with MS and was unaware I had it, and it did make it much harder as I look back.  Good luck!

[MandyLynell]

Thanks for the reply and I apologize about the long post I didn't realize it was actually that long. I was just so excited to be reading all these conversations about things that I feel are exactly what I've been experiencing since day one. It was a relief to maybe getting closer to finding an answer to  all my unknown brushed off symptoms.

I actually wanted to add, I just read about the MS hug and could not believe others have gone through the same episodes as I have. I was told it was just GERD or Asthma, or even a panic attack. I knew it was something else. I'm going to college finishing my RN and praying to someday be an Internist.

The Crohns was positive through a blood test, never one biopsy tested positive though. Yes, I do have back issues but my numbness/itchy(horribly annoying cuz its impossible to itch)/tingling/ that stretches across my mid-back, according to my neurologist is untypical of a spinal issue because it doesn't follow the normal pathway of those nerves where is stops right at the edge instead of coming around my side.

I am now in 75 thousand dollars of hospital debt 2wks here 3 wks here and yet my main concerns like my leg pain(dull throbbing), the dizziness(not lightheaded), the swallowing, the spasm in my throat, the fumbling over words, the shoot pain between my toes, the the little zapping burning stinging pains in my legs, my now reoccurant bladder infections, weakness in my hands, vision in 1yr went from 20/20 to 20/40, the exhaustion, my heat intolerane, these all remain a mystery and I may be reaching just to find a answer because at this point I've known there was something wrong for a long time I just want to know what???

And then get on with my life accordingly.

[supermum_ms]

Hi Amanda and welcome,

Could you please make sure you break up your posts into smaller blocks of print, (as i'm about to do) because people with MS commonly have visual issues and or cognitive issues, that makes reading large blocks almost impossible, you'll get more responses that way too :o)

I honestly couldn't read your post very well, though what I did manage to gleem doesn't actually sound like MS to me. Your sx's are too fleeting and wide spread, sort of all over the place, a bit of this and a bit of that but nothing you've mentioned jumps out as being specifically MSish.

I'm actually thinking the dx's you've already got, would probably account for just about, if not all the things you've mentioned - spinal damage and disc degeneration, Crohns disease, Fibromyalgia. They may not individual be a perfect fit but you dont just have one issue, your a complicated combination of and i still dont think MS is yet another or even instead of what you've been dx'd with.

Maybe someone else has a different opinion and will chime in soon, note its often quiet over the weekend.

Cheers........JJ