I've been poking around on here for a few weeks, so I thought it was probably time to say something. Hopefully I am doing this correctly. I am 44, was Dx with breast cancer at 40 (1st mammo) and Dermatomysitis (muscle disease) at 43. Now we're on to the next "big thing", which is a possible MS diagnosis. Actually, I'm thinking of starting my very own reality show and calling it, "Extreme Health" (insert raspberry here).
Didn't know too much about MS until my neuro (for Dermatomyositis) suggested it as a possible explanation for 11 month's worth of fruitless Gastro testing (the hug?) and my multiplying and increasingly bizarre symptoms. Of course I made a beeline for Dr. Google, read the symptoms for MS (checked them off on my timeline) and went, "Uh, oh..." I think we were both expecting lesions to show on the MRI, and were pretty surprised it came back clear. So now I have an appointment at the Mayo Clinic in a couple weeks for more extensive testing.
Anyhoo, to make a short story long I ended up here on one of Quixotic's (did I get that right?) informative postings on MS and clear MRIs via Google search. Pretty sure I've read most everything around here since then *grin* as all this waiting (and waiting and waiting) is not exactly my cup of tea. Guess that's all, other than to say this seems to be a wonderfully supportive group, and having been through the whole cancer/chemo deal I know exactly what a lifeline that is :o)
Welcome Jen. you have come to the right place.
Wow you have been through the mill.
Unfortunately waiting is something that most of us here are use to and it doesn't get any easier. DX MS seems to be a long and tedious excercise so park yourself here it could be a while.
Like you , I've had a bit of time up my sleave to get aquainted with most things on here. *cheaky grin* and there are lots of caring helpful people to help with your questions and relay your fears.
Good luck with the Mayo clinic. Let us know how you get on.
Thank you. For the most part I am just tired of riding the Medical Merry-Go-Round (as in stop the ride I wanna get OFF :o) It's awful to see how long it has taken some folks to get a diagnosis - yeesh.
Hopefully, I'll be in the right department this time (I just went down to Mayo in January, but it was to the Gastroenterology Dept). Looks like we spent around 11 months chasing the wrong rabbit *sigh*
Does anyone here happen to have any experience with Mayo? I'm going to the one in Jacksonville, and I am hopeful that their Neurology Department is "the bomb". After my disappointing visit in January to the GI there (who blew off most of my symptoms, gave me a bottle of pills, patted me on the head and told me to call back in a month) I have a less than favorable opinion of the *cough* world-renowned Mayo Clinic.
Guess I was expecting a bit more, since they are supposed to be THE place to go when nobody else can figure out what's wrong with you...
You are at the beginning of what often is a long road. I'm hoping it won't be a complicated one for you.
I wish I could say something good about Mayo, but I can't. Never been a patient there myself, but quite a few members here have, and virtually all have been disappointed and frustrated, often after big outlays of $$$. We have a saying here on the forum---Hold the Mayo---and for good reason.
People complain about dismissive arrogance and that kind of thing, much as you describe, but the big issue is Mayo's stance on diagnosing MS, which is different from that of every other reputable MS institution in the US.
You might want to use the Search this Community box to find threads and posts on this topic. If you still decide to go, at least you'll know what to expect.
Hi Jen! I'm sorry you're going through all of this. I wanted to say that while I don't know much about Mayo, if you find that you get the runaround there, I would highly recommend the Neuroscience Institute at Shands Jacksonville. They have the Comprehensive MS Center there, and some really good doctors that take care of their patients. They have yearly things like MS forums, which is an all day thing where the doctors give layman lectures about MS for their patients and families. It is a very supportive community. So, if it doesn't work out at Mayo, I'd definitely suggest going there!
Thank you for the welcome; I read many of the posts about Mayo and found them extremely disheartening. I found one that is much more recent (from January) that was very positive about Dr. Shuster. Since this is who I am scheduled to see, I sent that member a message with some questions (hopefully she will not mind :o) If this mess wasn't right on the heels of the cancer and the muscle disease, I might not be quite so agitated (well...maybe, ha).
Thank you so much for your kind words; I'm always glad to have a Plan B (well, okay, this might be more like a Plan D or E - I don't know, I lost count). Anyway, I guess we'll see what happens when I get there this time. If lesions show up and the CSF (right?) is positive and everything, I will need a Plan E if they will not issue a diagnosis - and I am SO not staying here in "never-know" land for much longer (I wish to be soup :o)
Welcome, Jen! Does your "I wish to be soup" comment refer to that old Campbell's commercial in which the kids peer into the kitchen and ask hopefully, "Is it soup yet?"
You've been through a long ride on the medical merry-go-round. I hope you get a reasonably quick explanation for your additional symptoms, but as you've probably figured out, diagnosing (or ruling out) MS is often not as straightforward as diagnosing cancer or probably even dermatomyositis (not that I know anything about the latter).
What are the symptoms that led you and your neuro to suspect MS?
Thank you Nancy; and yes, it does refer to the old commercial (I am, however, somewhere between hopeful and harassing/haranguing somebody out there :o) I know if I do end up diagnosed this month, (just over a year of symptoms) it will be blessedly short, comparitively speaking anyway.
The doctor had asked to read my written chronological list of symtoms (symptoms) (and points for him, right?) I had made it for the doc at Mayo, but he wasn't interested in reading it. My symptoms started with intermittent pain on my right side along the ribs (beginning of 2009) sometimes dull, then suddenly sharp, etc. Sometimes the pain likes to disappear then reappear on the left side (and once or twice I even thought I was having a heart attack, but it disappeared as suddenly as it started). Balance trouble ("listing" to one side when turning a corner, skirting an object, or for no apparent reason); Light dizziness (feel like I have an alcohol buzz, except I don't drink - ha) and trouble focusing (feel like I'm wearing one contact lens).
Numbness in hands and feet, tremor in RH (sometimes left and sometimes head nods or shakes slightly); dexterity issues with hands (this is huge, as I am a sign language interpreter). Index finger on RH freezing cold, then fine. Random burning pain in legs (sometimes in arms) alternating with a sharp pin ***** sensation somewhere else.
Oh, and my favorite one thus far was when I popped out of the farm truck at home the other day and went KERSPLAT! because my legs just folded up underneath me (they were "out" for about an hour). I know there are lots more (I've been a busy girl :o) but I am guessing this is probably enough (I will add I had a positive Romberg though).
ELEVEN years??? As in 1-1?? Oh, I do believe I'd be ready for a hospital hostage situation over that one, good grief!
Hi Jen, let me add my welcome to the group here. There's not much else I can add to their already wise comments and observations. I will hope that you don't end up in limbo with all the other fine folks there - you have already more than paid your dues with all your other ills.
As for the ****, there is an auto censor on the forum that takes out any word that has even the slightest possibility of being considered obscence - for that reason it is really hard to get away with writing pin p r ick . notice I put spaces in there and the censor doesn't find it as easily! :-)
We've even had members names censored before it it comes across as something unseemly. I've been zapped a few times and for the life of me couldn't figure out what I had written that was the offending word.
Welcome again - I hope we will see you around often.
Hi Jen. Wow, you've had quite an array of symptoms (as many of us have). It's confusing, isn't it? The legs going out sounds really scary.
Funny about the index finger going cold--mine does the same thing sometimes. It turns freezing cold, and it's not just a false sensation--when I hold that finger to my cheek, I can feel the cold, while the other fingers are normal. It never lasts long; it's just bizarre.
How cool that you're an ASL interpreter! (I assume ASL). I took a few terms of it but unfortunately didn't continue and have forgotton almost everything. I have always been interested in languages (studied linguistics once) and admittedly took a particular interest in ASL when I went deaf in one ear (due to sneezing) and worried about the other ear. (Fortunately the other one remains fine.)
Yes, that's eleven years. (Or it will be in about June.) I have not pushed for extensive workups because I think they would be fruitless, and I have not lost eyesight, ability to work, etc., so I consider myself lucky. And I always pass (more or less) that little whack-the-knees, tickle-the-foot, follow-the-finger routine, so I'm deemed fine. :)
Hey, if you're a horse lover, you've read Jane Smiley, right?
Thank you LuLu! And I sure am glad you explained the asterisks - I am having a teensy bit of trouble with *cough* mental moments as well, so I was a bit concerned about what I might have missed just then :o)
Nancy: Yes, I'm rather hopeful that my legs won't do that any more. That's superweird that your index does the exact same thing (thought it was weird enough mine did it!) It is a cool job most days (interpreting), although the dexterity and cognitive issues are wreaking havoc on a daily basis. It's fast moving, quick thinking work so you can see where this might be a bit of an issue. On the other hand, I AM at a high school so walking around in a woozy fog goes pretty much unnoticed *grin*.
Jen...has anyone talked to you about having myelopathy potentially associated with chemo or radiation therapy? There can be a link. Did you have chemo + radiation for your cancer? Also, you are continuing follow-up screening, correct? Sometimes there can be a paraneoplastic syndrome (as Quix actually just mentioned to me) that can come on as MS.
It's rare so unlikely, but given your history may be something to look into.
Welcome to the board. As you can see, people here are VERY helpful and supportive.
I love your nickname; it's great! I had chemo, but no radiation. My oncologist has me on a short leash *laugh*, so no worries there. Because I was young when diagnosed (40) and had a less than 1% risk factor for BC; and also because of the Dermatomyositis which is pretty rare. Too bad my "luck" doesn't run to lottery tickets, eh?
Thank you so much for the info! I'll add it to the list of things to ask when I go to Mayo later this month (at this point, I'm not discounting ANYTHING). I've already figured out what a wonderful place this forum is, otherwise I might not have spoken up (I'm a weenie, don'tcha know :o)
I've been spending lots of time thinking back (prompted by things said here) and can think of a couple things that might be relevant to MS. One was numbness and tingling in my left hand and forearm for several months during the first half of 2000. Thought it was the onset of carpal tunnel from interpreting; but couldn't figure out why it would be in the left, as I fingerspell with my right hand. Then it went away, and never came back (so I forgot about it).
The other biggie was major facial pain; from 2001-2002 I must have made 10 trips to the dentist and endodontist who could find nothing wrong (I was getting really scared I had TN, because my grandmother had it and suffered unspeakably). Ended up finally having a root canal on #1 son's graduation day (which is why the time frame is halfway clear), but the pain went away shortly thereafter so I just figured it was one of those "weird" things. Of course now I'm wondering...
Goodness, I think I've rambled enough already! Thank you SO much for your lovely welcome (and warm fuzzies :o)
[Senior Space Cadet] <-- Um, that title's not already taken, is it?
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