Officially in Limbo.. let the "fun" begin

[beckyls2007]

Yes I use fun sarcastically, because how I'm feeling is not fun!

A little background. I was diagnosed with a syrinx at c4-c6 (2007), very small and asymptomatic at the time. Had an MRI without contrast and 6.5mm slices with skips on Symphony machine.

Went to ER last night because I just can't stand the feeling that my legs are half asleep the past week. Have been awaiting a Neuro appt on March 3rd and from what I've read about the syrinx if it does happen to enlarge enough to cause compression of the cord, the nerve damage could become permanent. So naturally I wanted answers NOW.

Well ER did full blood cbc, thyroid panel, and two other tests. One of which I know was Calcium level and nurse said it tested 15 different things and another one she couldn't tell me what it was for. Going to hospital today to get those records to add to mine and take to my pcm appt on monday to get the ball rolling on an MRI referral BEFORE my neuro appt. No one seems to get the fact that I NEED an MRI to check on the syrinx before it does permanent damage. But that's Tricare for ya! My only issue with the syrinx causing my problems theory is that for it to cause this many symptoms (yes I'm not listing ALL of them, thank me later) it would be causing the supposed "cape-like" pain which I do NOT have.

The ER doctor did a neurological exam and tested all my reflexes, poked me repeatedly with a sharp stick (literally) then tickled the crap out of me with the cotton swap side. Showed positive romberg and positive bambinski signs. She didn't test hoffman. Had me walk on my toes and heels with my eyes closed, and apparently because I only walked like a newborn fawn (nearly falling repeatedly) she said I walked pretty good lol.

Told me it was probable I had an underlying neurological condition such as MS among other things but would require further testing (that they don't do there in ER) and was quite insistent that I MAKE SURE I get into neurology and put in another referral. Sorry it's long, understand if you got tired half way through and skipped (I do too). Thanks for letting me rant, even if slightly so.

[beckyls2007]

Got MRI/report - awaiting neurology appt on Thursday

Little update, like it matters.

Got he MRI on 28th on a 3T with and without Gad contrast on brain and c spine. Asked the details of scan and woman told me it was 5mm slices which is protocol for them (military hospital). After an hour of doing all the brain and c spine pre-contrast, she injected the Gad and spent another 10 minutes rescanning the brain and was done. Didn't wait anytime at all between injection and starting the machine back up. So I'm not even sure if the contrast had chance to fully distribute or not, which I will be discussing with the neuro (he did NOT order the MRI).

On my 2007 MRI I had been told I had a syrinx less than 2 vertebrate in length. Don't have the report from that MRI, just the films, ad the films show it is below the c4 and above the end of c5. It is hyperintense on T2 and darker on T1, barely visible in fact. On the new MRI, it's not there, at all.

I'm puzzled now. At least the syrinx could have explained most of my symptoms, now I have nothing in the blood work that have been done (CBC w/diff, Comprehensive Metabolic panel, Thyroid Stimulating Hormone Sensitive, Thyroxine Free) and the MRI of the brain/ c-spine. The only thing that showed up on blood work that I know could be nothing or one of a million causes is-

low chloride 96 (range 98-107)
high calcium 10.5 (range 8.4-10.2)
high protein(plasma) 8.9 (range 6.3-8.2)
high albumin 5.1 (range 3.5-5.0)
high wbc 12.7 (range 4.5-11.0)
high hemoglobin 15.9 (range 11.5-15.5)
high ABS neutrophils 9.1 (range 1.5-8.5)

Again I know those results can be probably caused by a million different things. But going on the fact that I have symptoms that come and go, most recently, bilateral paraesthesia (feeling of being half asleep but not numb) in both legs along with spasms and stiffness in my legs that lasted 6 days and left, fatigue, urinary urgency, problems emptying bladder, constipation, and sever short term memory loss. Most have come and gone, some have stuck around just not as severe when they first appeared.

What else could be doing this? My father in law has SPMS so I have seen the progression of his disease and saw a lot of similarities between some of my problems and his, but not all.

[SNOOPY]

Hello beckyls2007,

After an hour of doing all the brain and c spine pre-contrast, she injected the Gad and spent another 10 minutes rescanning the brain and was done. Didn't wait anytime at all between injection and starting the machine back up. So I'm not even sure if the contrast had chance to fully distribute or not

What you are describing is very normal. Do brain/spine MRIs --- slide patient out --- inject contrast through IV --- slide patient back in --- resume MRIs --- and done. The MRIs done after the contrast is rather quick in comparison to those before the contrast.

There is nothing in blood work within range or out of range that indicates MS. Blood work is used to rule in/out other health issues.

Information about diagnosing MS:
http://www.nationalmssociety.org/Sym.../Diagnosing-MS

Information about other conditions to rule out:
http://www.nationalmssociety.org/Sym.../Diagnosing-MS

[SNOOPY]

Information about other conditions to rule out:
http://www.nationalmssociety.org/Sym.../Diagnosing-MS

I put the wrong link in for the one above. The correct link is:
http://www.nationalmssociety.org/Sym...ns-to-Rule-Out

[beckyls2007]

Thanks for the reply(ies) Snoopy. I have actually already looked at the link you had given me (before you even sent it) in an effort to make a list of things to bring up at my neuro appt tomorrow. On the off chance he is like ever doctor I have seen the last few years and only wants to look at one symptom and not everything as a whole.

I am in the process of compiling of list of things now I am going to ask him to test for, including a lumbar mainly to hopefully rule out MS and an EMG to see if its peripheral or CNS involvement in my issues. Going to ask about a parathyroid test since the other thyroid tests came back normal and my mom is hypo but she doesn't medicate (self pay). My sister was diagnosed wit Sjogerns last year but I don't have the dry eyes or mouth, as she does. No one else in my family has any neuro symptoms, except an uncle with Parkinsons and an aunt that had GBS.

When I said the woman slid me out, poked me then back in and started again, I mean she was done 10 minutes after injecting me. At least from the research I have done, protocol is to wait 10 minutes for full circulation. Since the brain is "protected" behind the BBB the contrast won't circulate immediately like with the rest of the body. Which is why the 10 min wait is supposed to be in place.

I guess I will find out more info at my appt tomorrow if he even will order anything. Doubt it.

I don't want you to think that I "want" this. I have noticed a "trend" with some of your other posts in the Limbo Land thread that almost have an undertone to them. Like "oh geez, someone else thinks they have MS". Not saying your trying to sound condescending (neither am I by the way) and realize that its hard to read "tone" in words. You always try to immediately redirect (understandably) but by doing so it may turn people off and make them not feel "supported" or even welcome here. Me included.

I came here because I am worried about MS, not for myself but for my son. I haven't told anyone in my family because they don't need to worry about what my doctors are looking to rule out, mainly my husband. Watching his dad deteriorate so quickly due to MS, only to be given the thought that there is a SLIGHT chance his wife may be going through the same thing. I can't tell him and let him worry about that. He's active duty military and has other, more important things to worry about.

As I said before my father in law has spms and has been getting really bad the last year. His MS dr recently tried him on Tysabri without testing him for JC virus which did in fact reactivate giving him PML 6 months ago. From what I have read the more people in your family that have MS the more likely (very slight but still) that you can happen to have it. Again not saying I have it but IF, and a very big IF I do end up having it. That makes 2 people above my son on the family tree that have it. I know its only a very slight % of a chance it gives my son (4yrs old) but still even an extra 1% chance of him developing it, is not good with me. That alone gives me motivation to get an answer as soon as I can to know whats been going on.

Again, I don't mean to upset you with my comment about how I have read your replies to me or anyone else. But it's just how I read them. I'm not trying to sound judgmental because I'm honestly not. It was just an observation of mine and didn't know if you knew you were coming off like that or not. If someone makes it this far to join a forum to ask questions, they are probably looking for understanding and support. Thanks again for your reply and sorry mine was so long!

[beckyls2007]

Neuro Appt

Went to Neuro today. He said neuro exam was "fairly" normal, whatever fairly normal means. Refused to test for Lyme, copper/vit D/b12 deficiencies, lumbar puncture, nerve conduction/emg or anything else. And when I say refused, I mean he wouldn't even entertain the idea. Said my previous syrinx was just a cyst in in my central canal of spinal cord but is gone now. After only wanting to talk about my most recent symptom of bilateral paraesthesia, he said that it's pointless to test for anything (mainly nerve conduction) or do any tests because they wouldn't show anything since the leg symptoms only lasted 6 days and are gone now. Though I told him it's still there, just very faintly.

He did put in for me to have mri of the rest of my spine to check it, since my most recent episode of symptoms was from the chest down, but was only for my piece of mind to make me feel better. From his entire demeanor, he wasn't concerned at all that I've had symptoms that have come and gone the last few years. Like I said in my previous post, he wouldn't do anything and only put in the mri because I told him I wanted it but wouldn't put in any blood or lumbar tests at all.

So back to waiting and wondering. Can't just switch to a different neuro since I am tricare prime. That would require me calling tricare and saying I want a second opinion and then waiting for that referral and only being able to talk to the new neuro. Any tests they want to do will NOT be covered under tricare unless I get special approval for specific tests and wait for another appt after tricare has already approved those tests. Not even sure how long that will take honestly.

[jumangi]

Second Opinion

So back to waiting and wondering. Can't just switch to a different neuro since I am tricare prime. That would require me calling tricare and saying I want a second opinion and then waiting for that referral and only being able to talk to the new neuro. Any tests they want to do will NOT be covered under tricare unless I get special approval for specific tests and wait for another appt after tricare has already approved those tests. Not even sure how long that will take honestly.

I was only Dx last year (July) even though I have had paresthesias for 8 years before that. The neuro I saw for my initial symptoms was truly horrible. Since than I have been in contact with both good and bad ones.

My impression of your latest encounter makes me believe you are not comfortable with your neuro. So I would think you should invest the time to seek that second opinion.

In my few months of dealing with this disease I have come to realize that things do not need to move rapidly. It appears to be very "normal" for years to elapse between first symptoms and a definitive diagnosis.

In addition, the diagnosis is done through a process of elimination. Your post made it clear that your neuro did not want to do the more common differential tests. And while I am no expert wrt your blood tests, those high levels could indicate some other issue. If it is, then your current neuro should be exploring that avenue. He/she is not, so again, a second opinion would certainly seem to be in order.

I know the bureaucracy can be daunting, but I think you should reconsider and set those slow wheels into motion.

Best Wishes
Bill C.

[SNOOPY]

my father in law has spms and has been getting really bad the last year

From what I have read the more people in your family that have MS the more likely (very slight but still) that you can happen to have it.

My father in law has SPMS so I have seen the progression of his disease and saw a lot of similarities between some of my problems and his, but not all.

I came here because I am worried about MS, not for myself but for my son

You are worried about MS for yourself.

What appears to have happened is you have seen what the disease has done to your Father-in-Law, researched Multiple Sclerosis and it scares you (understandable). Fear and anxiety can cause physical symptoms and mimic symptoms seen in MS.

You do know you can't catch MS?

He did put in for me to have mri of the rest of my spine to check it

Hopefully the spine MRI will put your mind at ease about MS.

[beckyls2007]

Thanks for the replies. Just called for the T sspine MRI and it's set for March 21st and a follow up with neuro for April 6th. If he still doesn't want to pursue any other reasons for recent symptoms I will have no other choice than to go for a second opinion.

@Snoopy, I'm not lying when I say I'm not worried about MS for myself. I have always been a person that believes everything happens for a reason. When one door opens, there is a reason that it did. Mostly the reason is only seen in hindsight. But I have faith that I will always see a clear reason for something with hindsight. And yes, I KNOW that MS is NOT contagious! Was prepared to move from gulf coast MS to upper peninsula of MI to care for FIL when he took a turn downward until my MIL could be medically retired from her job. But being the super stubborn full blooded Finnish man he is, he completely refused. Mainly because of incontinence problems.

I have been having random issues since my oldest was born that have gotten worse when my youngest was born (4 yrs). So NO, I'm not "hoping" for a MS diagnosis, just a diagnosis so I can move on, knowing a name for what is making me hate living in my body. Never wanting to go anywhere or being too tired or legs being too stiff to run around and play with my kids. I will update once I get the MRI and rad report for my records.

[beckyls2007]

T spine mri

Had the T spine MRI today. After the tech took the first set of pictures, apparently the DR told him to do the lumbar and add contrast as well. So what should've taken half the time took the hour and a half it took for the brain and c spine.

Looking at the CD with pics only, I noticed they did A LOT of fractional anise images. Some with color, others with the static looking pictures. Don't know how to read those which is a shame because that's half the images they took. Not sure what made the DR change my orders and add all the extra scans. I do know whatever it was, it's going to bug me until I can pick up the report in a couple days.

Hope all is well with anyone who reads this.

[beckyls2007]

Second opinion here I come

Called the Neurology clinic to try to get in sooner, and the front desk just took a msg and had the Nuero call me back. Well he just did and all he said was "your tspine was normal, anything else". Being completely turned off I said ok and bye. His tone just instantly pissed me off, like it was a huge inconvience to have to call me.

Called tricare, apparently I have to see my PCM to get a new neuro referral to a specific Doctor. Gonna start looking for a civilian neuro for when I see my PCM on the 30th. Going to also have him run blood panels for whatever else can cause my symptoms. Specifically b12, vit d, RA, Ana titers. Anything else I should have them test for the symptoms below that have been bothering me the last two months (going to leave out ones from more than 2 months ago).

-Legs feeling half asleep but not numb
-muscle twitching in small areas (from chest down on body, including inside of arms close to body)
-tightness around chest/ribs
-stiffness/tightness in legs
-urinary frequency/retention
-extreme sensitivity to cold (entire body tenses up)
-toe cramps (toes fan out until I force them to relax with my hands)
-weakness in arms/legs (very noticeable in left arm)
-memory problems (short term)

I'm sure I'm leaving something out but you get the idea. What tests would you request be done? PCM can't do lumbar or nerve tests in office, mainly lab work.

[beckyls2007]

More blood work back....

Went to PCM on the 30th, and put in for a second opinion and blood work. Waiting on new neuro to call me after they get Tricare authorization but just got results from blood work. New neuro secretary asked why I was needing to be seen, told her the symptoms from my previous post and her first question was if I had an EMG, the main test I'm begging the Navy neuro to do but he is refusing. Saying it won't do any good. Lab results are below.

-I apparently have high cholesterol which I will work on but not "kill me" high.
-Negative ANA with titers
-B12 = 403 (normal range for lab is 239-931)
-Vit D = 44.8 (range 30-100)
-HGB A1C = 4.9% (normal)
-Potassium = 4.8 (marginally high for their lab)
-Creat serum = .55 (range .57-1.00)
-PTH = 13 (range 15-65)

So according to this I do have a low parathyroid but I'm reading that it causes low Calcium. Mine was high last blood draw a month ago (10.4) and just within range at the high end this blood draw (9.7). I have my next appointment with navy neuro on the 7th and going to hopefully be able to talk him into doing an emg. If not I will have to wait until second opinion neuro calls for appt, but that receptionist said they are scheduling out until July.

Hope all is well with those who read this!