MS? I'm new here

[kcoyle68]

This started 24 years ago when I was 21 (Now 45) I was taking a nap and the phone rang.  I answered it and it was my mother.  I could not say anything, it was as if I forgot how to talk.  I could only say "Yes" and "No" and giggled alot because I didn't know what was happening. 6 monthes later I had another "episode" but this one started in my right eye.  I got an aura in the center of my eye that spread out into a "C" shape, but had no pain....I did however get confused and couldn't talk.  I could hear questions, but trying to answer them made it worse.  These continued to get worse for years and started coming closer together.  During one of my "head things" (as I started to call them)  I went numb on the right side of my face along with the aura, difficulty speaking and confusion. (to this day I still have permanent numbness in my fingers)  I had a "head thing" one time three times in one day and I called a dr.  He scheduled me for an MRI and when it came back he told me I had a benign tumor behind my right eye that was unoperatable, that it would have to start growing before they could operate and that they would only have a 6 month window to do so.  That was about 14 years ago.  I have since had a few CAT scans that show nothing, but this lovelyness has now progressed to something that was really worrying me.

Last year, before my wedding I started getting some ringing in my left ear that lasted for days and developed what felt like a sore throat lump (which in hind sight was probably a muscle spasm)  I also had what I thought was chest pains and I had my husband rush me to the hospital only to be told that my heart was fine and that it was probably a panic attack (although this lasted....less severe though, for a couple of weeks after the wedding)

In May of 2012 I went out drinking one night (I'm usually not a drinker)  and I drank pretty heavily that night.  The next day started with another nightmare, which I believe now was a flare.  I felt sick, which is understandable, but never quite felt real well over the next few weeks.  I was at work and my left eye was normal, but my right eye started going off in it's own direction all over the place (This had happened twice before.  Once about 20 years ago and then again about 2 years ago)  There was no pain, but it was just a bit freaky.  As soon as that stopped, I got a really bad Charlie horse cramp on the right side of my neck and my arm just fell....it felt so weak!  It only lasted about 30 seconds and then my other arm went out! (these Charlie horse like cramps had been going on for a few weeks and always in my neck)  I went to the Dr. ( a new one) and he told me it was not a tumor, as a tumor wouldn't affect both sides of my body.  I told him about what was happening and told him I was also having burning in my legs....both legs, as if I had gone in the snow and then ran them under warm water.  It hurt and there were fire cracker like twitches going off in my legs....radomly all over.  My Dr. asked if I had heard of MS.  My first reaction was relief! (At least it wasn't a brain tumor and maybe now this will explain what is going on with my body and that I'm not dying)

I cannot get a MRI contrast scan though until we have insurance (which will be another couple monthes) and I'm okay with that.  I have a good attitude and have looked up alot on this disease and identified more of symtoms which includes:  Acid reflux, anxiety, bowel problems....this a fun one! But now I've learned to keep a spare set of clothes with me at all times in case I have an accident in public.( thank the Lord I am old enough not to get totally mortified at this) **shrug** it is what it is, but man would I have lost it if I was younger. Brain fog, vertigo (for about 10 years now but very light episodes) extreme fatigue, stiffness, muscle cramps and i now get this thing where it looks like i've smeared my left eye with vaseline (comes and goes and moves)  There are so many more things that happen, but I am grateful if I have a day that only two or three things are going on.

I have been a lurker here for awhile and the thought of writting all this has been daunting, but wanted to introduce myself and see what you all thought and if any of you had similar stories prior to finding out?  I'm afraid of getting a diaginoses before our insurance kicks in.  

I've been looking at other mimic diseases such as lupus, and fibromyalgia but those don't seem to fit as well.  Is the first step an MRI contrast scan?  I just some other friends that can relate to this.  I don't want to dump on my family.  Any suggestions?

[kcoyle68]

Thank you for all your replies.  I would have thought it was just possible migraines (without pain) as well, accept now the muscle cramp-charlie horses, inability to walk more than 15 minutes without hip pain and the whole muscle twitching got me thinking more towards MS.  There are other things too...the intense itching....numbness in hands and face...the whole bowel thing.  I just don't see how those are even close to being just migraines , but I will go and look to see if those are possible symtoms.  I just want answers.  Its interferring with my life.  Hopefully my family and I will have answers soon

[essdipity]

I agree that this doesn't really sound like MS, and send good wishes that you find the true cause and maybe a cure.

I must say, though, that bilateral symptoms do not necessarily point away from MS. Many people, even early on, experience odd events on both sides of the body. What would be rare is identical or nearly identical symptoms on each side. Usually one side is more extensive than the other, or, for example, the right arm and left leg could be affected.

Also, lots of MS issues don't involve 'sides.' Bladder problems, dizziness, heat intolerance, cog fog and fatigue are just some of these.

There are so many neurological disorders that hazarding a guess based on symptoms and symptom location is not a good idea (although anything 'all over'  or that moves around frequently is virtually never MS). The whole clinical picture is required, and this means imaging, thorough neuro exams, and other testing as indicated, as well as symptoms as reported by the patient.

I wouldn't recommend matching up a list of possible MS symptoms as found online as a good method of narrowing things down for most purposes. Some of the online stuff is just plain wrong, and in other cases it's so vague as to be useless.

ess

[SarahL2491]

I have to agree with JJ and PD, it doesn't sound like MS.  Particularly when you mention both sides of the body being affected.  Normally it affects one side or the other and then later might move to both sides.

I'd have the MRI as soon as you get your insurance to be on the safe side.  Welome to our nook and keep us posted, we all learn from each other

[supermum_ms]

Hi and welcome to our little MS community,

I have to agree with what PastorDan has said, overall there is more that is not typically consistent with MS than there is, and although there would be no one who wouldn't totally understand the relief at finding out you dont have a brain tumor, i dont think your going find MS is the answer to whats been happening to you over the years.

MS is often difficult to dx, visual issues are very common (optic neuritis, nystagmus, diplopia etc) but even though you have mentioned a lot of strange visual events, they seem more in line with Migraine than with what typically happens to people with MS.

It often helps if you gather together any testing (visual or otherwise) that you may have had [eg 1995 dx benign brain tumor, 1999 dx optic neuritis, 2001 dx nystagmus, 2005 dx action tremor 2011 dx anxiety etc etc etc ] just what ever you do have hard evidence of and for things that never got dx write a brief description of it.

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

[PastorDan]

Oh, you might want to check and/or tweak your profile.  It tells me you're male.  Somehow, I get a different impression from the other things you've written here.

[PastorDan]

Good morning, and welcome to this little corner of cyberspace.  You will find an army of great people here.

I went back and read your journals, as what you describe above sounded a bit like migraine to me, more than MS.  The stuff you've journaled strengthened my opinion.  I'd even go so far as to ask your doc if that's what it could be.  I am particularly struck by the c-shaped visual issues and the one-sided headaches.

I am not a doctor, though, so don't assume I know what I am talking about!  ;>D

Regardless, we pray for an accurate and speedy dx, and effective treatment ASAP.

God bless, & merry Christmas.