MS-torture

[opiesgirl]

I can only hope that this post helps someone out there. I have dealt with Dr.s who are not willing to help me over the past 10 years. My symptoms started as a child but were overlooked. Im going to tell you what I have dealt with in hope it helps..Vision and hearing deterioration, was diagnosed with Lupus but some Dr.s would not-they would only say-AutoImmune- battled with depression my whole life, weak bladder, heat intolerance, light sensitivity, weight has gone from over-weight to anorexia, chronic sinuses problems,had 2 bouts of temorary paralysis and Dr.s never new why, migraines, severe itching episodes, unexplained rashes,chronic lower-upper back pain, hip and knee pain, insomnia, mind fog unable to retain info, severe fatigue, muscle and joint pain-with inflammation and stiffness, gastro-problems-GI Dr unable to diagnose, shoulder pain, nausea and vomiting, ringing in ears-along with other noises amplified in head, numbness and tingling, muscel spams and twitches..I have not yet been officially diagnosed and will see Nuro tomorow who will schedule MRI..this comes after I had a SEVERE case of Facial celulitis that went into the EYE orbit-tested positive for Viral Menengitis and Viral Herpes..the viral is taken care off and my symptoms have worsened..tingling and vibrating in muscels is worse than ever, off balance, lose ability to move right leg and then it goes away, feels like im sideways sometimes, the body pain and migrains have increased, of course crying spells that i can not control..bladder is worse and bowels are unbearble..Spinal tap showed increased levels of SCF protein and glucos..hoping for a definite answer soon becasue the progression is speeding up and is very scary..i also hear noises in my head when trying to sleep that sound like "short circuit" only way to really describe it is-my husband welds sometimes and when the metal is making that "zzzztttttztztzttzt" noise thats what it sounds like..i hope this helps anyone out there who has suffered like I have cause im really not sure how much more I can fight, it has really taken me down this-flare-up fast...take care

[opiesgirl]

I did not list all of the Disorders that I have been diagnosed with over the years because there are alot, but if anyone is interested..i will post them

[opiesgirl]

just wanted to add- chronic sore throat -also feels like a golf ball is stuck in it, jaw pain and even chewing it "pops', swollen lymph nodes in neck and under arms, thyroid always up and down, fast heart rate, night sweats-or when sleeping- thumb nails grow with deep horizontal ridges and hurt, chest pains teeth deterioration-break off and generally poor condition-DO NOT use street drugs or drink alcohol. may have already said it but my speech is worse, words dont come out right and seems kinda slurred sometimes, other times its fine

[supermum_ms]

Hi and welcome to our friendly little MS community :o) I am sorry you've had to deal with so much over the years, though i do need to say that your sx dont exactly sound MSish, most of what you said in the last post are not sx associated with MS at all. MS is known for having many mimics, but Lupus is whats said to be the greatest immitator and if you have one auto immune condition its not that unusual to be dx with others too, though it would make dx rather complicated sometimes.

Have a read of our health pages, just to the right of your screen, it may help you understand the dx process for MS, i'm sure you'll find them all informative as well as interesting.

Cheers..........JJ

[Ricobord]

Believe it or not, but Lyme Disease can cause everything you describe, especially in smeone who has had it a long time.  Ticks are not discriminating when it comes to a meal.  They will bite anyone, any age.

Please post this on the Lyme forum to get more feedback and suggestions.

[opiesgirl]

Yeah, ive been down this road for many years and have been tested for Lymes, Rocky Mountain Spotted Fever, west Nile and lots of others..as an update, I saw my Neurologist and he said that I NEVER had Viral Menengitis or Viral Herpes..He thinks MS and has scheduled me for an MRI to check the Mylan. Have to wait another 1.5weeks to get final diagnosis. He said that if I had an infection, viral or Bacteria, the SCF protein-from spinal tap- would have been in the hundreds, like 700, mine was not. Mine is only elevated to 70. he said that it was a marker for MS. Also looking at the bloodwork, from ER visit he said there was no indication of infection. I am currently still having slight fevers-only get to 99-, headaches, muscle twitches, tremors, charlie horse type cramps in my feet, wide spread body pain in muscles and joints, numbness ans tingling mainly in left arm & leg, and unexplained rash has now been on both of my sides-raised tiny white and red bumps-,I also wanted to add that several years ago I used to constantly  have an intense itch just under the belly button and it would stay red-i no that it was not a nickle reaction. After that went away it went to my ankles and tops of feet. Its the type of itch that you just cant scratch, its deep within and drives you crazy. I am hoping to get more answers soon. Thanks for taking the time to read and care!!

[opiesgirl]

Thanks for posting. I am not saying that every symptom I have is MS related. But at the same time I also know that most of these things can not be explained by the Dr.s. They have ran alot of tests over the years and ruled out alot but have been unable to treat me properly because they say they KNOW for a fact I have an autoimmune disease,1 Dr. said Lupus, and others will not diagnose other than Mixed Connective Tissue Disorder- Auto Immune Disease. Making it harder for them to treat me. I am thrilled though after years of tests I have finally found a Dr. who is going the 1 step further and doing the MRI-its never been done- I have had 4 CT Scans done in the last 2 months on my head. So really hoping for some answers this time and guesses. Thanks for posting and taking the time to care!!

[meg321]

Hi there,

Was just trying to read all of this, my brain doesn't take that much in anymore, I have to really focus on what I am reading.

I think once the Drs get it all sorted out, it will be easier.  I know I have so much going on with the MS now, its crazy.   Some may not be the MS at all. who knows.

I just hope you find out what it is you have...will be watching the board to see what happens.

hugs, meg

[LisaJF]

Im glad a doctor is finally going to have a MRI done.  Hopefully it will be of your brain, cervical and thoracic spine, with and without contrast.  If just of your brain, it would be a waste of your time and insurance money.  If you have been tested for everything under the sun over the years, then I would hope that this test here will be thorough.

Like most said, there are a lot of neurological diseases that mimic MS.  MS is an autoimmune disease where your body attacks its own myelin sheath that surrounds the nerve fibers.  

Im sorry that you have been going through years of this.  It does get tiresome, especially when the health care professionals don't listen giving you the feeling they don't care, its not their body right?

Don't forget after your MRI to state you want a copy of the test on CD.  Some facilities charge for the CDs, but its still good to have.  You also want the written report by the neuroradilogist who read your MRI.

Good luck and keep us informed.