New here
 

Hi Everyone:

I don't know where to begin; i guess greetings and hope everyone is feeling well, or as well as can be :) . I have been reading this forum for about 2 wks, finally decided to post. I am really impressed with how everyone here really seems to try to help one another, one of the best sites I have found!

I have been having physical problems for many years, no diagnosis as of yet.
As most of you probably have, I have seen many, many Drs trying to figure out what is wrong.

What I can think of right off the bat...

Dysphagia for all solids (very worst one, want to EAT!)
Headaches
Neck pain
Pain between shoulder blades
Muscle spasms/twitches (arms, legs mostly)
Stiffness (whole body); actually can't let go of stuff sometimes;
(very hard to do hair, can't hold arms over head very long)
(going up the 10 steps in my house my legs have a "tired" feeling and
want to give out sometimes)
Heart pvc's
Laryngospasms
Memory problems (in the middle of a sentence forget what I'm saying, or
can't find the word I need)
Stand up and almost pass out
Floaters and flashes in vision
Vertigo
Raynauds
When lay or sit so back of head is in contact with something, head will
"go to sleep"




All symptoms seem to be getting worse lately.

Diagnosis' that i DO have:

GERD, LPR, gastroparesis, undiagnosed motility disorder, narrowing at the cricopharyngeal junction of esophagus, anxiety . (sure there are more, but can't think of them right now)

Latest Gastro Dr was thinking MS so he sent me for an MRI. (will try to attach/implant here).

Findings on MRI were a few punctate foci of hyperintense t2 and flair in white matter(long explanations of where); and t2 signal medulla (not corroborated on flair, may represent artifact)
Mildly prominent CSF spaces, suggesting reduced brain parenchymal

Will also put a copy of a neck mri I had last year prior to exploratory surgery

Almost forgot, about a year after the dysphagia started, had a cyst removed from my pharynx.

Have an upcoming appointment with Neurologist soon.

Any help or ideas would be greatly appreciated. I know this post is very long and I apologize, but thank you for reading.

Scarlett

some of those symptoms {the upper body ones} made me think of Thoracic outlet syndrome{TOS} -but are you having any RSI
{repetitive strain injury}or hand arm problems? any falls or car wrecks/whiplash- hitting the head /neck or shoulders?

If not maybe some of it is vertebral artery symptoms?
http://www.dizziness-and-balance.com.../cervical.html

I guess you'll know more after the doc goes over the MS testing with you.

Jo

Thanks for your input. Yes, been diagnosed with carpal tunnel in both arms.
Have had whiplash injuries 4-5 times, a couple severe.

Forgot to mention in the original post left ear pain comes and goes (severe);
sometimes don't even know till pick up phone or touch and 'owwwww'.

I am not familiar with either TOS or VAS, will check them out.
Again, thank you very much.

Scarlett

did you find our thoracic outlet forum here?
http://neurotalk.psychcentral.com/forumdisplay.php?f=24
and our useful links? full of info and therapies
http://neurotalk.psychcentral.com/showthread.php?t=84

Funny (Not "Ha Ha" Funny!), I Had the Same Reaction As Jo!
 

hi scarlett and welcome to you. i'm so glad you're here! you're sx sound eerily familiar to me also and i have a rather severe case of true neurogenic TOS, bilateral and with some vascular sx thrown in just to keep me on my toes (oh yes, and sx IN in those tosies and footsies too, now that you mention it...:eek: ).

hard sometimes to resist the temptation to just lump everything in and attribute it to dread TOS, i'm afraid, though. happens to be one of those dx which can and will mimic a whole host of other syndromes and distinct disorders. very difficult to dx and we may be a lot of things, but last time i checked, nope! no M.D.'s after our names. so the best thing would be to find a top TOS specialist to rule it out or in and proceed from there. i hope that you do not have it, personally, and that it just looks and sounds so familiar to Jo and me because we live with it day in and day out that we, quite naturally, "go there" so to speak, almost by rote. but my instincts tell me otherwise, unfortunately, scarlett. i do think this bears some serious looking into in your case, and i hope your docs will give it the attention it deserves. you've come to the right place to begin to find out one way or the other, at any rate, and if nothing else, will meet some great people in the process over at the TOS forum and elsewhere in your neurotalk travels and for that i am happy indeed.

what part of the country are you in? many of us (myself included) burned through multiple diagnoses, over several years' time and as many physicians and countless tests before finally finding the one which gave us that aha! moment (or in my case, the oh, sh_t! moment, scarlett:wink: ), or as i like to call it the "TOS y.e.s." - it can explain so much, believe me, that made absolutely no sense prior! but not without it's own set of gloom and doom from a prognosis standpoint and no stranger to controversy as perhaps you already know...so hang onto your seat my newfound friend, it may be a bit of a bumpy ride:D ...

so many of us on the TOS forum carry dual or multiple diagnoses (a competitive lot, you say? don't even start with us! we are a bunch of overachieving perfectionistic type 'A' goal-oriented workaholic lovable nutjobs, scarlett!). so welcome, and welcome home. lots of one-armed hugs await you. feeble but heart-felt ones. if you say your pain is 9 on a scale of 1-10, then mine is at least an 85! and if you have TOS, RSD, MS then i have TOS, CRPS, FMS, CMPS, and my dog just died. you see how it works? that's how you get in the club, scarlett. i hope i'm making myself perfectly clear, here.

kidding! i am so totally kidding, girl! please do not ever take anything i say seriously if you're at all unsure i probably have my tongue firmly implanted in my cheek!

i mean no harm or offense to anyone, just am a sick ticket if you will. i really want to welcome you with open arms (both of them wide open!) to the TOS forum and our little family over there.

and you know what, even if it turns out technically not to be the correct medical dx for you, i do believe some of the tx and modalities would totally be beneficial for you, scarlett. because so many of your sx sound exactly like what we deal with on a daily basis, physically, mentally, emotionally, spiritually and every day and every way.

so welcome. breathe. relax, kick off those shoezzz.

alison

i'm going to PM you my phone # in case you want to use it (let's see how crazy you really are, OK.)

ciao for now.

alison

Jo:

Thank you very much for the links. The symptom list DOES fit, just about all of them, in all the categories. I have not had time to really look at the TOS forum yet, have checked the new posts since yesterday on there though. You have both MS and TOS? Do they go hand in hand sometimes?

Again thanks so much for the ww too! :)

Scarlett

Alison:

:D

You are a character!! LOVE it.

I am in Maryland. Drs I have seen have been at Georgetown Univ, Wash Hosp Center, Johns Hopkins.

After going over the site that Jo sent me, I hope I don't have it either. Some of the other diseases/problems that have all these symptoms are not very "appetizing" either! With my luck I will have both TOS and MS!! (trying to get into shape for the TOS forum ;) .

It is so aggrivating going for all these years with no diagnosis; and even having some Drs think you are a head case (after seeing all the positive test results!!); also, being "dismissed" by some when they can't "cure" you, or even dx you!!

I have always been pretty competitive in everything too. Lately though, just feel like pulling the covers up and going to sleep!! Will try VERY hard to get in the "sport" though :D !

Thank you for your warm welcome and I will see you over on the TOS!!!

Scarlett

Welcome, Scarlett. Boy, that sure is a mixed bag. I have MS and some of what you report does seem familiar, but more does not in my case. I know too well how fun the merri-go-round of dx is, hang in there.

Oh, nice brain!:)

Scarlett...Alison is a character but we love her..well maybe..Alsion ...TOS yes? I love it .

Your symptoms sure do sound like many of us TOSers experience. We have stickies at the top that you can maybe find a doc that is familiar with it. THere is one of the top docs at Johns Hopkins.

Best of luck, welcome and I'll be looking for you round the TOS forum. Watch out we are a crazy bunch...but jo does keep us in line.

Also just a suggestion that I have found. Have your b-12 checked, especially if you have neuros problems. We have some experts here at the forum on b-12 and even if the docs think you are in normal range, you are not. Check out the vitamins forum. Take some sublingual methyl b-12. No swallowing. :) It will help all those muscles twitches etc.

welcome
 

Hi Scarrett i'm from the everytime i go into the hospital i'm in yet
another forum. I'm usually in the PN one. But i can relate to many
of same problems your having. You are at least in good Dr. territory.
It took me a lot longer to post. Now aren't you glad you did,everybody
will be so generous with there help. Hope to see you around more :) Sue

Jo thanks for the imformation,i was in a head on collision in (96) my
neck flew forward ,even with seatbelt my head hit dashboard. My
oldest son pushed my blangs away saw the big bruise on my forhead.
Oh no he said to the others brain damage ,the others laughed,he was
serious. It's awful how easy we forget and later they show up now my neck
hurts ,not then.

! more thing Scarrett write everything down,and make sure you carry it with
you. We do get anxious and everything goes blank,at Drs. office and
hospital.

After My Nap, Shelley and Shiney Sue:

Thank you all for the very warm welcome; especially thanks for the compliment on my brain AftMyNap :p :o

Shelley: yes; I have my eye on Dr Freshlag>sp. After the next two appts will hit my primary with seeing her :p Where do you get the under tongue b12, just ask pharmacist?

Sue: I have been planning on making my list, just not sure how much to put on it....I guess everything :eek: we might be there all day long though, and it might p him off (won't be first Dr to get peed at me) :p
Afraid I'm not real nice to them anymore if they aren't nice to me. Done with taking their holier/mightier/smarter than thou crap.

Well, have to run. Will try to post to TOS soon, have alot going on so don't think I forgot if you guys don't see me right away, I'll be reading and post as soon as I have a little time.

Thank you all again!!!!!! :grouphug:

Oh! Alison, got your ph no will call you when I get a chance, my son graduated from junior college this past week and it has been crazy!

Scarlett

You can get the sublingual methyl form of B-12 from whole foods or any homeopathic store. I know some people get it from iherb.com. Definitely read the stickies on B-12 inthe vitamin forum. All very interesting.

Scarlett,

Make sure the dose is high enough. And don't buy the sublingual bit from some slick marketer that uses cyanocobalamin. Watch out for hype.

A reliable brand of methylcobalamin, at least 1000 mcg.

And as Shelley said.

rose

Hi Everyone:

Just thought I'd let you all know I haven't forgotten about here.

I am reading the forums everyday.

Had neuro appt. will PM each of you in morning. Had granddaughter today and wiped me out!

Rose: I specifically wanted to ask you about the B12 though; I did find one at Giant Grocery that melts under your tongue, it is 5000 or 10000 mg though.
Is this too much? Very expensive too...$34.00 for 30 tabs. Re: the cyanocob....vs the methyl.... is it really that important? I forgot to write down that info before I went and can't remember what it said. Will write it next time though!

Will talk to you all soon. Thanks!!

Scarlett

Scarlett,

Congradulations on your new addition to the family. They are great little bundles. This was a great day to have a little one, one of our granddaughters turned 4 today.

Darlene:hug:

Darlene:

Sorry, wasn't clear. Grddtr is 2, and TERRIBLE!!
There IS another one coming, in Dec., though. Thanks for the thought!
You are right, LOOOOOOOOOOOVE her!

Scarlett

Scarlett,

One thing that can mimic both MS and TOS, and/or cause many other problems is B12 deficiency. Even if something else is going on and causing the bulk of your problems, B12 is a very good idea because lack of may be contributing, or lots of the right kind may help you with the other problems (mainstream research and even better medical textbooks for years).

Thank goodness, one can easily and inexpensively take care of the B12 possibility by taking at least 1000 mcg per day. Do read the info at my website (not commercial, and it won't take you long to read the whole thing).

rose