What else could this be??

[Zacksmomi]

So I have been told by my GP, 2 neuros and an MS specialist that I have RRMS.  None of them seem interested in my history from childhood, and are calling my first flare from MS Dec 7, 2008 when I woke up with numb fingers.
over the next  2 months it got worse and I got MRI's that showed lesions in C-spine, brain stem and Dawson's fingers in the brain. Feb 2 09 I developed L'Hermittes sign from one of the C-spine lesions.

Since my dx I have been given Baclofen and Gabapentin (then Lyrica) to help relieve sx's.
I have been to opthamologists for eye issues, orthopedics for hip/pelvic issues, and everything comes back nothing visibly wrong it must be from MS.

Over the last 18 months I have continued to go downhill and my neuro seems to think that some other problem like sarcoidosis, sjrogren's, celiac disease or something else is causing my huge list of sx's.  I have had 4 rounds of solumedrol 1000mg for 5 days since May of '09 and I get a little better then seem to get worse after a couple weeks.  

So I don't know what my point is here.  I guess I am wondering if I just have to accept that I have RRMS and I am having a bad first couple years, or should I continue to pursue other problems that could be causing some of my sx's.

The list includes:
vision probs (healthy optic nerves)
extreme fatigue
facial weakness, twitching, tingling
leg pain, muscle fatigue, creepy crawly thighs
spasms in bladder, ribs, right arm
pins and needles in both feet creeping up as high as thighs sometimes
numbness in index finger and thumb on right hand

I know these are all MS sx's but they have all gotten progressivly worse with no change to MRI at all and no visible active lesions on MRI when I am sure I am having an attack.  
The MS specialist ran a bunch of tests but I don't go back there till Oct and that is just to follow up with my Tysabri treatments. (which I switched to since the interfeurons weren't stopping progression and causing site reactions)
I don't know where to go from here.  I feel horrible.  I am getting worse everyday, and I don't want steroids again.  

Sorry I am rambling, I just don't know where to go from here.  I am just frustrated because I am being told I may have all these things that mimic MS, so how can they be so sure what I have is MS???

Ok thanks for listening
D

[Guitar_grrrl]

Hey, D,

Be good and patient with the Tysabri.  It took 5 infusions before I noticed an improvement in my energy level and strength.  For me, I get sleepy for a day after the infusion, then I get a surge in energy and strength for about a week and a half, and then the fatigue and weakness returns until my next infusion.  I'm at that point right now, and I can't WAIT until my next infusion (#7) on the 25th.  

I'm learning that Black and White thinking has no place in MS or anything else.  I send big hugs from my mountains to yours!

[RedFlame]

This is such a great thread that I hate to watch it go to the second page.

[jensequitur]

I think corticosteroids relieve inflammation, so the pressure in your brain from the lesion is reduced and helps you feel better.

[Quixotic1]

Hi, Guys, this is a great thread and one that I want to examine and comment on - though I know that I don't have the answers.  I just commented on the "squishiness" of the different ways that MS can present and realized that I cannot think clearly nor explain my thoughts (those that I understand) very well.

I have been on a med (through my own fault) for the last couple of days that made me feel really awful.  I am coming off of it, but still feel punk.

I will try to remember to come back to this.

Quix

[Zacksmomi]

Jen- All of my MRI's have been done on 3T.  There is one of the discs I have that I swear I see a huge lesion but the Drs don't see it ?!? They do believe the lesions are there though so I am lucky in that sense.  
Sometimes I wonder if my Drs are just running millions of tests and putting me on tons of meds cuz I have good insurance.  The steriod thing is weird to me too, but maybe it is helping to relieve some of the spasticity and that is why we feel better?? I mean athletes use them to heal muscles (oh wait no they don't hehe!!!)

Red- Thanks for being here. I know what you mean about not wanting to share all sx's with the Dr.  Some issues I have could be MS I suppose and I have never mentioned them.  It is not like I want more pills for probs anyway :)
I really don't think PPMS is what they are looking at, but I am afraid of SPMS.  Just bothers me that the Drs want to spend money and feed me these drugs to "treat my sx's now" and not worry about my history.  When do you start worrying about my history...1 year, 2 years, 5 years after the meds don't work??   UGH!!!

OK I am better now
Big Hugs to you gals

[RedFlame]

I just now had a chance to read the post you made after Shell's comment.  It's just awful that your doctors haven't put all of this together.  Doctors are so stubborn and bullheaded.

I feel a kinship with you after reading more.  I am  completely numb in my torso with the exception of probably 2 dermatome areas.  I am numb upper inner thighs too and everything around my vulva.  Thank God!!  I can't imagine being numb there.  It's so embarrasing that I haven't told my MS specialist.  

I just wanted to tell you again that I will hope and pray that it is not PPMS.  Regardless, we will all be here and you can email anytimel     Red

(((Hugs))

[jensequitur]

I have to wonder about that steroids comment - steroids made me feel better after my first flare.  Less incredibly dizzy and fatigued and stammering - more able to function.

If you have numbness in the torso, I'd say you almost certainly have some spinal lesions.  Have you done the 3T MRI?  I just got some done of the thoracic, and they're a lot more clear than the ones on the .7T.  

I hope you start feeling better!  Take it easy - Jen

[RedFlame]

Will be hoping the best for you!

Red

[Zacksmomi]

Thank you everyone.
I have some wierd issues from my past including losing my voice for 5 months when I was 15 and then contracting Mono when I was 16.  Once when I was 18 I got out of a hot tub because I was feeling weak and I fell and could not stand up.  Mind you I had been drinking a little so I wrote it off to that.  I crawled up the stairs to bed and have not been able to sit in a hot tub since.  I also developed motion sickness suddenly around that same time. None of my Dr's seem to want to report any of this.  I guess for insurance purposes, it is easiest to put exact dates??
The MS specialist insisted that he put my attack in Dec 08 as my MS start date for the Tysabri program.  

In Dec 08 my right arm went totally numb for 6 weeks and then I got most of it back.  Then I got L'Hermittes sign Feb '09.  So This is 2 seperate obvious attacks that make the Drs say RRMS. I have no relief from the L'Hermittes and  since then my walking has gone down hill.  I have not had to resort to a chair yet, but am supposed to rent one when I go to an event that requires too much walking.

Basically I started noticing problems with my legs in Feb '09 also, but didn't break down and get a cane till Aug. I have not been able to go without the cane since Nov. There have been periods after treatment with solumedrol where I feel almost "normal" or at least some bit of improvement, but that lasts only a couple weeks and it seems like after each round, the fatigue and walking probs come back worse than before.  

I do have the bladder issues Red described, and have had episodes of bladder spasms so bad I have gone to the hospital twice and had CT scans for stones.  Only now do I know what that pain is.  I have had it everyday this week since Sunday.  I prefer giving birth to that one :)

The MS specilist thinks I have 2 T-spine lesions that are not showing up on MRI, but I am often numb in the torsoe too.

My neuro thinks that since the steroids actually "make me feel better" that there is an underlying issue since steroids aren't really supposed to releive MS sx's.  He looked into Sarcoidosis.

My neuro sent me to the MS specialist who "highly doubts" I have sarcoidosis (my ACE level was 73 and high is 67) but is testing again.  The specialist started me in the Tysabri program.  He saw me when I was literally in my "top form" and able to walk 2 blocks at a time while we were in SF (using my cane of course)

He made me feel like I don't even need my cane and he expects to see me continue to improve from the flare I just had and even ditch the cane soon. He did not see any spasticity or probs with my gait. I wish I would have walked a couple blocks before I came to see him. If he could see me now 6 weeks later...UGH!! I wish I would have held off on treatment and let him see me at my worst.

He started me in the Tysabri program and I have had one round of treatment.  I go Wed for round two.  The night I got home from round one I developed a horrible sinus infection.  I had just gotten back from a funeral for a good friend that died tragically in his home.  I was already worn down bad, so I opened myself up for that one.  

The MS specialist says that often after 2 or 3 Tysabri treatments people have more energy and walk better so keep my fingers crossed. I went back and saw my neuro that referred me to the specialist and he said they don't send him any lab results.  The specialist is 3 hours from here.  I guess I can try to call his dept and find out more about the results.  

Jen- You are my biggest hope, that this is just kinda like what you went through and it will settle down here shortly.  I can live with what I have going on if I can curb this fatigue and start to exercise a bit.  


Thanks for being here.  Just writing this out makes me feel better.  

[sllowe]

Hey D,

I'm surprise to hear you could have a mimic. I thought all that was in the past when you received your dx.  But, it's a good thing the Dr. is looking into other, or possibly a compounding issue. It will make you feel better.

All you can do sweetie is what you are doing. Keep getting your tysabri, and let the Dr. thoroughly exhaust other contributing possibilities.

Has this decline been for the full 18 months? You have got to get back to the Dr. for more than just to continue your tysabri. You'll feel better to know results of what he's looking into. Dblvision if I remember correctly had Dr. explore other possibilities after dx and a handful of others.

We're here w/you during this. One thing at a time. I think because there is not cure at this time, we tend to go to regular docs for regular reasons, only to find out it's our MS. Then, boom, back to square one w/not being able to get the problem "fixed."

I'm so sorry, really, really hoping you get some comfort and peace in our words. Here w/you all the way!
-shell

[RedFlame]

D, I'm sorry to hear that you have been in so much pain for so long!  

Have you had these symptoms (in various combinations) continuously since 2008?  Have there been any times like maybe a week where it felt like there wasn't a deterioration but a plateau?  

My understanding is that for a doctor to place you on Tysbari or any of the other treatments, he has to show that you do indeed have RRMS.  So he thinks that somewhere along this process you have had a remission.  It's possible to have something else in conjunction with the MS----like you really needed another disease.  Perhaps he/she is making sure that you don't have PPMS.  Or they are wanting to see if you have gone into SPMS.  

One thing about PPMS is that there typically isn't that much happening as far as plaques in the brain.  There maybe some, what is more typical is to have them on the spinal cord.  PPMS destroys the actual neuron itself instead of the sheath surrounding it.  Since there is more neuron loss there could be 'black holes' instead of plaques.  

My symptoms started a year ago and continuously worsened while adding new symptoms each week it seems.  The progression can be slow or any thing along the spectrum.  In one year I have become unable to walk, unable to perform my activities of daily living, unable to drive most of the time, falling frequently, my torso is completely numb.  I have to push my urine to come out.  I could go on but I won't.

If it is PPMS the progression can be slow.

Is there something in your health as a youngster that you think is important?  Is there something specific that you are worried about.  

I think that we often have intuition about what is happening to our bodies.  If you feel that there is something your doctors are not hearing I suggest going to your PCP and starting there.  Maybe they can talk to your MS specialist.

Can you give us more info?  

Maybe Quix will chime in also

Hugs,,    Red

[jensequitur]

When I was first diagnosed, I felt awful, and for about a year and a half after that, I felt awful.  Varying degrees of awful with almost no break.  It took about three years for me to feel almost normal...  well, you know, the new normal.  And then my legs started acting up.

The reason they call it RRMS is that there are times when you don't feel quite so bad.  So if you feel progressively worse, and you've felt worse and worse for two years without a break, then you'll need to have your disease reevaluated.  But many people still have the RRMS label, even when they feel they don't have relapses.

Of course, sometimes you don't realize you're in a relapse until you feel better.  I had one in July and didn't realize it until I started feeling better.

I think RedFlame has been diagnosed with PPMS - let's see what her take is on it.