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"New" to it all
Posted: Fri May 02, 2008 10:52 pm
by RedPenguins
Hi everyone,
Well, "cheerleader" mentioned I should post here....so here I am!
I recognize some names here from another forum...so hi!
This is long...but I realize as I sit here, nearly 4 months into this out-of-the-blue random diagnosis....I will share...
Let's see - I'm new to ThisIsMS and MS altogether.
On December 22, 2007, the right side of my face started feeling weird - within a few days, it was entirely numb from chin to scalp - including my tongue - HALF of my tongue was numb! It is very trippy (sad to say, I still have that symptom).
Anyhow, I was out of town for the holidays at that point, and didn't think much of it. My jaw (TMJ) problems were acting up and so I figured it was that. When I got back home (Los Angeles), right before New Years, I noticed some other weird stuff - like I was exhausted. I figured traveling had gotten to me...especially since on my outbound trip I was trapped at LAX (airport) for a good 21 hours! I would go out on an errand and have to go home after an hour or two – because I was just fall-over tired. Outrageous. Every once in a while, usually while driving, I had a second or two when I felt “dizzy” and my vision flickered. Thought nothing of it.
January 2, 2008 – my dental specialist is finally back at his office. I go to see him…he tells me that my jaw is not causing the numb face (at this point, I hadn’t put together the exhaustion or vision stuff with this. I had actually forgotten about those things). He says I should get to a neurologist sooner rather than later! Okay, so now I’m convinced I have a pinched nerve in my face/head somewhere. Still not thinking much of any of this really.
January 3, 2008 - I have double vision and I can not drive because the vertigo is so unbearable. I’m told to go to the ER – where I had to ask someone to help me fill out the forms because I can’t make out anything! I have a CT scan. It shows nothing. Okay, stop laughing – it does show I have a brain! They give me pain meds and send me home. I didn’t want pain meds – I wanted to know what the heck was wrong with me. Fortunately, I had taken my dental dude’s advice and had already scheduled my neuro appointment for January 4th…
January 4, 2008 – my friend drops me off at the neurologist’s office. I hand the receptionist my IDs because I can not fill out the form. At this point, I swear, the room is moving one way, the floor is spinning the other way, and I need a seatbelt just to sit in the chair. I meet the neuro…..he does an exam. He asks all sorts of things that I hadn’t thought of (bringing up the exhaustion – now hereto referred to as fatigue, etc.). I finally say, “So, do you think it’s a pinched nerve?” – to which he casually tells me that he thinks I had a stroke and it is affecting my brain stem. !!!!!!!!!!! Did I mention that I was 31 yrs old at the time??? He sends me for an MRI immediately – and by immediately I mean that I was in the machine within 30 minutes.
Fast forward about two hours:
It was a Friday afternoon when I hung up the phone. Or rather I hit the “off” button. Then I sat there. Did he just tell me that a UFO landed in my front yard and aliens were heading to my front door? I think he did. I need to call my friend and let her know. But what exactly am I letting her know? Would she believe that aliens were in my driveway? Would she even understand what that meant? I know that I didn’t understand – but more importantly, all I really knew was that I needed someone else to know.
Okay, so he didn’t exactly say that – but he might as well have said that – because what he said was even more distressing, made even less sense, and was more random than aliens.
“You have MS.”
Silence.
“What?”
“Multiple Sclerosis – do you know what that is?”
“Yes.”
The conversation lasted exactly 12 minutes and 37 seconds. I always wondered if the timer/counter on a phone was an important or useful feature – and now I knew that it was. Surely he said more than just those few words – after all, a lot can be said in 12 minutes and 37 seconds. But what did he say? I remember his voice and the matter-of-factness about it. I remember asking two distinct questions (I may have asked and said more, but it escapes me). “Can I still have children?” and “What’s the prognosis?” Of course, I asked these questions but barely heard the answers.
I was sitting on the sofa. At least my body was there as he spoke to me. The rest of me – my mind – was nowhere to be found. (Thinking about it now, this was a state that I was going to have to get used to.)
I had been sitting and waiting for a call from the neurologist. When I had seen him earlier that morning he told me that he believed I had a stroke and that it was affecting my brain stem. He had immediately sent me to have an MRI that instant.
While I laid in the machine for an hour, listening to the loud banging surrounding me, I tried really hard not to think about what was happening. Of course, this was easier said than done, as the facial numbness I was experiencing was rapidly becoming just the tip of the iceberg in terms of my symptoms. Who knew that vertigo and extreme dizziness would feel worse when in the laying down position? That hour seemed like a lifetime....though I was quickly transported back into the moment when the test was done. The imaging facility would not let me leave right away; they wanted to call my doctor first to discuss something. Now I knew I was in trouble.
In the hours I waited for him to review the MRI report I tried to remain calm. I was 31 years old...what did he mean that I had a stroke? Despite being able to access any and all information at my fingertips (sometimes our relationship with the internet and world of knowledge is not only a blessing but a curse), I chose not to spend my time researching strokes and brain stem injury. It was all too surreal. Naturally, as I was struggling with double vision at the time, playing with the computer seemed too difficult without making the other symptoms much worse. What happened to the facial numbness just being from a pinched nerve somewhere in my face? Though the doctor had dismissed that notion hours earlier, I had not let go of that thought. Stroke? What on earth was he talking about? And now he's talking about Multiple Sclerosis? Suddenly stroke didn't sound so scary.
He had never mentioned MS as an option. Stroke was the front-runner, migraines being second at bat. But MS? Surely this was a dream.
I am on a DMD - I used Copaxone for 5 weeks and then switched to Tysabri. I have my second infusion on May 9th. My medical records have been sent to Johns Hopkins as I really would like to undergo the HiCy/Revimmune treatment. I saw my neuro this past Tuesday and I was told that I was declining rapidly... I believe he rated me at least a 3 (or 3.5) on the EDSS. Less than four months ago, I was at a 0. This is unacceptable!!!
If you've made it this far....thanks for "listening"...
~Keri
Posted: Sat May 03, 2008 2:08 am
by jimmylegs
welcome keri, sorry to hear your story but you've found the right place for info and support! i have to split for work in about 20minutes or i'd spend more time but for now, again, welcome
Posted: Sat May 03, 2008 3:59 am
by Artifishual
Hi Keri and welcome
After spending a little time here you will find this is a very helpful place with compassionate caring people with a plethora of knowledge. It was nice to meet you. Arti
Posted: Sat May 03, 2008 4:55 am
by Loobie
Keri,
I'm glad Cheer got you to come on here. She's pretty cool, eh? You will find many like her on here and you must be scared to death to be in such a downward spiral. I just wanted to welcome you and let you know that you can ask ANYTHING on here. There is someone on here with the information you are after. There is at least one expert on just about any topic concerning MS and wellness on this forum. Welcome and I hope you decline comes to a halt soon.
Lew
Action plan
Posted: Sat May 03, 2008 5:16 am
by lyndacarol
Welcome, Keri. As I posted for SallyDC recently, I think the same recommendations are good for you or anyone newly diagnosed:
You sound intelligent, capable, and in a good place with a support group to deal with this situation. Welcome to this site; your research and contributions may help all of us here.
First, take a deep breath.
Second, if you are quite sure of your self-diagnosis (not usually a good thing to do), start your personal MS library with Multiple Sclerosis: The History of a Disease by T. Jock Murray, OC, MD. I think The Multiple Sclerosis Diet Book by Roy Swank, MD, PhD and Barbara Dugan is a good second book to have.
Third, have a thorough physical exam and ask for any kind of blood test possible (including a fasting serum "insulin" test--I am known at this website to be obsessed with insulin!). When you have an MRI, ask that the radiologist make a special note of the sinuses. Many with MS report sinus problems (including myself). Ask for a copy of all your test results for your own file.
Fourth, from this day forward, eat a healthy diet. In my opinion, this means removing all sugar (including beer, wine, etc. which have sugar), all artificial sweeteners (These promote insulin production, too.), all trans fats (These also increase insulin.), and white flour (in fact, all carbs so far as possible) from your diet.
To your specific situation, Keri, your sense of humor is wonderful and will be valuable in this journey! And while it is usually good to jump on solving a problem early, there are no accepted answers to MS yet (And remember the "stroke" diagnosis--the experts can be wrong at times!) and caution is always advised--there are no promises, especially with clinical trials. With my suspicions of insulin, I recommend trying diet first.
Once again, welcome.
Posted: Sat May 03, 2008 5:30 am
by belge
hi keri!
hope you're doing fine! btw, did you have any reactions to tysabri? I really hope you'll soon be great!
have fun,
veronika
Posted: Sat May 03, 2008 6:49 am
by cheerleader
Keri-
Welcome...the troops are amassing. I've pm'd you.
Lynda Carol hit a good one...have as many blood tests as you can tolerate. Vitamin/mineral levels, hormones, LYME (often presents as facial numbness/Bell's Palsy- IGENEX has the best test for this)
Johns Hopkins has a huge list of tests to take, they cover most of these items.
Here's the info from Chris-
chrishasms wrote:The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins
Hi-Dose Cytoxan Patient Evaluation
Dear
This is a list of the necessary evaluation tests needed prior to your Cytoxan therapy. These tests need to be done between ________and ____________
Please fax results to the BMT Office at _______________by __________.
Please alert us at ______________if it will not be possible to have the test results by this date.
CBC, differential, reticulocyte count
Basic Metabolic which includes: Na,K,Cl, CO2,BUN,Creatinine, Glucose, Ca
Hepatic Function which includes: AST/ALT, Alk Phos, Bilirubin (Total & Direct), Total Protein, Alb
LDH
PT, PTT
HTLV I and II
Hepatitis B surface Antigen
Hepatitis B Core Antibody (IgM and IgG)
Hepatitis C Antibody, HCV NAT
Anti-HIV 1 and 2; HIV-1 NAT;
S.T.S./RPR (Syphilis)
Viral titers:
CMV (Cytomegalovirus) IgG, CMV IgM
HSV (Herpes Simplex) - IgG
VZ (Varicella Zoster) - IgG
Immunoglobulin Survey (IgG, IgA, IgM)
and IgG subclasses
Estimated Sedimentation Rate
Urine dipstick and microscopic exam and culture for bacteria
Chest X-ray, PA and Lateral
Chest and Sinus Cat scan
Pulmonary Function tests (including DLCO), Spirometry (FVC and FEV1), Single Breath CO Diffusing Capacity, Helium Lung Volume
EKG
MUGA (or ECHO) for LVEF
I had to fast 12 hours before the blood tests. For the lung tests I cannot take my steroid based inhaler 48 hours prior, no albuterol inhaler 8 hrs prior, and no caffeine on the day of the test.
NO responses needed, start a new post for questions if needed.
Learning about your MS over the phone...yeah, the aliens have landed, and are beaming you up. I'm really sorry.
AC
Posted: Sat May 03, 2008 9:55 am
by AllyB
Hey Kerri
Welcome to the site, and wow! You are really having a rough time (not that ms is ever really easy), but I can understand your sense of unreality!
I really wish you well - get as much information as you can - AC and the others are right, there are lots of very informed people here. And remember, you are not alone in this.
Take care.
Thank you!
Posted: Sat May 03, 2008 11:18 am
by RedPenguins
Thank you, everyone.
Lyndacarol - just to clarify - I did NOT self diagnose (unless you count my believing it was a pinched nerve that I had). I have seen two specialists who both have said MS and that it looks gnarly. My MRI couldn't have been confirming if it actually had a neon sign on it that said "Vacancy here: MS convention". 
I do not doubt my dx....tho, when I see my neuro, I will always double check and ask, "Hey, are you sure it isn't a pinched nerve?" ;)
I've asked more than one neuro if I should have an LP - and they all agree that it would just be a painful but unnecessary procedure for me - there is no doubt this is MS. (Oh, my sinuses are clear, too.)
I have had some blood work done, but not all of those mentioned. I think I will bypass the neuro and ask my primary doc to send me for them. I will not make any comments on here about my neuro, as I recently learned that he and/or his staff was reading the boards on neurotalk.
Oh yeah, I am new to this site...however, have been on NT for a few months now. I have read MANY books on MS. I am in a group at UCLA for those newly diagnosed with MS. The neuro on that staff is one of the authors of "MS For Dummies". I have read a lot...talked to many people...I'm not taking this sitting down, so to speak. (You can see my post on the HiCy threads, too.)
I have the Swank diet book - actually, Amazon sent me 3 copies of it by accident. I also have the MS Diet Recovery Book. Sadly, although I am able to rally myself together on many things regarding the MS - I can not get myself to start doing the diet yet - but am working on it....I will get there.
Veronika - my only reaction to the Ty was that I was beat for a few days afterward - not the usual MS Fatigue - but a whole lot worse. Then it eased up.
I am on meds for the fatigue - it is an ADD med similar to Ritalin - but it is a PATCH that I wear - which is VERY cool because the level of the med is consistent throughout the day - so no ups and downs. I tried provigil and I think it made me more tired. Oh well. When I don't "take" my med - I am just so exhausted, I can not function.
Okay, looking forward to getting to know you more,
~Keri
Posted: Sat May 03, 2008 11:57 am
by cheerleader
Keri-
quick question....
Is there any thought in your mind this could be Lyme?
Did you do any steroids after dx...did it help/hurt?
For people with Lyme (or infections), steroids can exacerbate the situation.
I did a bunch of research on this because my husband and I are hikers/campers and our dog had ticks a few years back. Your facial presentation and quick progression rang the bells for me-
Good idea having your GP do all the additional bloodwork, but if you have any inkling there is a Lyme potential, you might need a Lyme literate doc.
http://www.lymediseaseassociation.org
I mention this only because Lyme is not routinely and thoroughly screened. Lots of respected neuros hear quacking if you mention it. We did the Igenex test for Jeff on our own and it was negative. We're both glad we ruled out Lyme. Another infection to rule out is Cpn. Antibiotics are the way to go with Lyme or cpn.
You are really well-educated and have good care. I don't mean to over-step boundaries or imply you haven't already been tested for these infections- I just know how those neuros think
AC
Posted: Sat May 03, 2008 12:07 pm
by Nenu
Welcome Keri! Not sure what forum you're referring to, but I do use another to post. I hate that while it's a good place to chat, you can't PM users.. but you sure can here! Plus the rules are a lot less strict around these parts
Posted: Sun May 04, 2008 3:27 pm
by pegs
Hi Keri,
Welcome and I hope you also research LDN (low dose naltrexone)
Take Care!
Pegs