This Is MS Multiple Sclerosis Knowledge & Support Community

HI IM 29,im trying to figure out if i have MS.Ive recently,been having my right side fall asleep or have the tingling numbness in my foot really bad!!Ive also exprienced Lhermittes sign in nov.2007and after that i had acute hyperthyrodism,in 2008 after april alot of the symptoms went away but i was left with anxiety disorder now.Ive been seeing the same doctor and now have been expriencing alot of numbness now in my right side and ask the doctor if could have MS he got me an appt. which is tomorrow doing a NERVE CONDUCTION STUDY,is this the right first step,i need to know what i should say or what the doctors should be doing for me!Im not sure if i have MS or some thing else,but doing some googling leads me always to MS.I have alot of other stuff but im not sure if i can even explain them in words how they feel in my body. Alot of things started with my shoulder on my right side than my elbow and knee than just that side falling asleep for no damn reason,also just my big tow has this intence sleeping feeling in it always wakes me up with intence sleeping pain feeling.And also im starting to feel a throbing type of pain shooting through my arm down into the top of my hand not sure what that is.PleasE any body give me some advise.THANKS CHERYL WASHINGTON STATE

me x 5 -

the nerve conduction test was one of the first tests my orignal neuro gave me. what clinched the ms dx was an mri head neck & spine.

People that are dx'd with ms so not necessarily share the all the same symptoms. although there are some diseases that share ms symptoms. I would go to www.discoveryhealth.com and research their database of rare diseases to compare symptoms.

Good luck in your quest for answers.

me x 5,

I think you're right to pursue the issue with the doctors. I started having nerve pain, numbness, tingling in the feet and legs in 2004. I didn't do my research, just sought answers from a podiatrist (don't laugh, it seemed a logical choice at the time) then gave up and accepted it. I really regret that decision. Maybe I'd have less scarring now if I'd started treatment 5 years ago....but....maybe not, who knows.

P.S. I had the nerve conduction test in 2004, the results were abnormal, the dx was "peripheral neuropathy" <---------WRONG!

thanks Karazhan,that really helps when peolpe give there first attempts of getting help!I have no clue whats wrong,have you been diagnosed with MS and can you tell me how !!

I had my left side go numb with lots of tingling. I had to push for further tests. I finally had an MRI (twice) and was sent to a neurologist. He did a spinal tap to confirm and it was MS. I felt like I knew from day one. I think you just know!

Thanks Sunny Day,I want to pretend for now that I dont!!Im holding out hope its an awful spine problem that takes a magical pill and bed rest!!I dont want to wake up yet!!!lol

Me X 5,

Here's a brief timeline on my dx;

2004: severe foot pain - dx was Morton's Neuroma - Treatment was surgery but the pain never went away.

2005: numbness, tingling and spasticity in feet and lower legs (mostly right side) - dx was Peripheral Neuropathy (based on nerve conduction study) - Treatment was some ridiculous light therapy supposed to magically heal damaged nerves.

At this point, i should have been asking "why are my nerves damaged?", but I chose to boycott all doctors and therapists. The problem has gradually gotten worse.

2008: over the course of 3 days (Dec 24, 25 & 26) I lost about half of my vision field in both eyes (Imagine you're wearing glasses and on both lenses, the left half has been covered with electrical tape). I was absolutely TERRIFIED!

2009: after visits to GP and Opthalmologist, an MRI was scheduled for Jan. 5. I show up for the appointment but passed out in the waiting room. Passing out was most likely non-related but it may have been a lucky turn of events because I was given HIGH priority from then on. MRI was done that evening and over the next 3 days in hospital many, many tests were done (some I don't remember). I had 5 lesions in my brain, one being on the optic nerve. I was then referred to an MS specialist.

2009: Jan 20th was my first appt. with the man I like to call Dr. Colonel (not sure if I like him yet). My bloodwork and lumbar puncture results were in and all positive. He said "Looks like MS, let's schedule a spinal MRI. Study these packets and decide which treatment option you'd like and get back with my assistant, come back in 3 months". I had the MRI in February, called back a week later to hear the results and was told that it was positive for MS. I would assume that means at least one lesion was found but I don't know yet and i find that incredibly frustrating.

I'm currently on Rebif (just finished my 8th week). My appointment with Dr. Colonel was to be on April 28 but his office called just yesterday and left a message on my answering machine stating that he would not be available because he is on call at the hospital that day.

Soooo, I'm stuck with the diagnosis of "Looks like MS" to which I say; AFTER TWO MONTHS ON REBIF, IT DAMN WELL BETTER BE MS!" (yes, I hate the stuff!!!!!!)

This wasn't as brief as I'd hoped, sorry.

After reading the post by Karazhan (and elsewhere the posts by zap and cheerleader), once again I doubt that MS is neurological.

I worry that MS has been labeled as "neurological" many years ago and now it is next to impossible to get it out of that pigeonhole.

How do we start again at square one? How do we find an unbiased scientist who will examine the evidence and let it lead him to different conclusions?

Karazhan

At this point, i should have been asking "why are my nerves damaged?",

Thanks for your post its helped out alot,im waiting for the second part of my Nerve Conduction Study,so im hoping they have some news for me,and I will ask the doc why!If there is nerve damage but I feel I do cause these are the strangest damn feelings running through my body!I wish this was happen ing to some one else!Not to sound to selfish!!Im really nervous about my eye sight that would freak me out!!thanks for sharing your story!!

Lyndacarol,

I'm still very new to this and I find that the more I read, the more confused I get. All the different theories are mind boggling, I mean, they make sense when I read them but I don't know which to believe.

Could you explain a little more about what your thoughts are on MS not being a neurological condition? -also- Why did my post re-enforce your theory?

Karazhan-- To your question,

Could you explain a little more about what your thoughts are on MS not being a neurological condition? -also- Why did my post re-enforce your theory?

I will say:

1.MS has been locked up under neurology for DECADES without significant advancements in understanding the disease process, in my opinion. Too many of my own symptoms seem to fall outside the realm of neurology: My insulin levels are elevated (Endocrinology?). I believe my chronic sinusitis and drainage are involved in the MS process (ENT). I have poor circulation, unexplained bruising, constantly cold extremities, swelling of the feet and lower legs, burning and prickling sensation in the legs and feet (Vascular).

2.Your symptoms also seemed explainable outside the realm of neurology. The event you recounted from 2008 -- the three days over Christmas -- seems especially significant. Were you having sinus drainage then? Were you eating lots of holiday goodies that could raise your insulin level?

3.Numerous studies have shown that there is no correlation between the number of lesions and the severity of symptoms. Upon autopsy people without an MS diagnosis. Because I know people who have NO lesions, but who have serious symptoms, I don't believe there is any connection between lesions and MS at all.

Lyndacarol,

Thanks for the explanation, it does cause me to re-examine my own situation. Prior to the Christmas holiday, I had one of the worst sinus infections ever. It was just starting to get better in January when I went into the hospital. There was even something on the MRI report about "thickened mucosal in sinus cavity" (well, something like that). Sinusitus is not a chronic problem for me though.

My blood sugar has been on the high end of the normal range for the last 15 years or so but I did have gestational diabetes in 92. I definitely had not indulged in many holiday goodies last year (for a change), in fact, I had little to no appetite during this time and had dropped a few pounds so I don't really know if my sugar would have been elevated.

You could begin by testing my theory about multiple sclerosis and Inclined Bed therapy, or is this thinking too far outside of the box?

lyndacarol wrote:After reading the post by Karazhan (and elsewhere the posts by zap and cheerleader), once again I doubt that MS is neurological.

I worry that MS has been labeled as "neurological" many years ago and now it is next to impossible to get it out of that pigeonhole.

How do we start again at square one? How do we find an unbiased scientist who will examine the evidence and let it lead him to different conclusions?

For 15 years I have been shouting that ms is a problem with the circulation in the nervous system and the main circulation system. Many people have made unprecedented recovery from ms and other neurological conditions by refusing to sleep flat. IBT addresses the circulation imbalance by gently assisting and regulating the flow while we sleep.

Most people with ms can relate to how different they feel during the night and first thing in the morning when trying to get out of bed. Same goes for Parkinson’s disease, which again I feel is not a disease at all but a problem with how our plumbing works in relation to gravity.

So many people report problems with sleeping, increased pain, spasm, rigidity, sleep paralysis, snoring, arrhythmias, fibrillation, insomnia, body temperature control, aching muscles and joints, tinitus, sinusitis, respiratory problems, hiatus hernia related problems, gastric reflux, back ache, stiffness in the spine, even spots erupt at night. Nightsweats, and even our eventual demise at around 4am all point to the fact that sleeping flat might not be the wisest move we will ever make?

When I began this research 15 years ago, I had no bias, no corruption, no financial incentives and little knowledge of how the medical profession was stacked up against new ideas and thinking outside of the box. Stupidly, I thought everyone would welcome this important discovery with open arms, rather that carrying on regardless sweeping aside any evidence that “was not invented in-house” .

In fact, all that was required is an enquiring mind that prodded and probed problems a little differently to the somewhat blinkered approach of the vast majority of “well educated people” But being an underdog and an outsider has great advantages. Because when people say you can’t do that because. Lateral thinkers go ahead and do it anyway and don’t have the shackles of being a member of the white coat club. Freedom to think and follow wherever the light shines is a great advantage. A bit like a child who does not have all the adults rules rammed down his or her throat forcing them to obey the commands of their peers. Imagine reading in a science book that water will not flow up a single open ended tube under normal atmospheric pressure to a height more then 10 metres. Then going ahead and causing it to flow effortlessly vertically to 24 meters and more using a pinch of salt. Change the rules and you change the results.