It's been a long while since I've been here...

Hi everyone,

I haven't been here in AGES. If any of you frequent the Lyme board, you may know me from there.

I'm going to see my neurologist on Thursday for the first time in 18 months. I have been trying to get a diagnosis for almost 6 years. I have suspected MS all along - in fact, I just looked back in my records and on September 16th, 2005, my doctor stated "Patient is concerned she may have multiple sclerosis. She is sent for an MRI at her request."

I have seen probably 5 neuros since then...and they all said no MS.

Today, I can barely walk. My balance is so bad and my legs are so weak (left leg is weaker than right and muscles have atrophied - not sure if this is related or not as I have been diagnosed with sciatica in the past and am having a lot of low back pain on that side). I cannot think or focus long enough to have a normal conversation. I am unable to work out...my muscles give out on me very easily. Sometimes even typing is difficult. It is just as if they have a certain limit and then they're finished, so they stop working. I cannot feel my legs unless something is touching them or if I have my legs crossed so they are touching each other. If I am sitting in a chair and my legs are exposed...it's like they're just not there (proprioceptive dysfunction). It's the strangest and scariest sensation.

My only concern is that I have never fit the criteria for any type of MS besides PPMS. Since the first day I woke up with a symptom, I have not had a good, normal day. Every symptom has stuck with me. I have never had a flare that went into remission. Never. I'm confused because I have read about MS for about 6 years...and even though I don't fit the typical presentation for RRMS, I don't EXACTLY fit with PPMS either. I have read that PPMS usually presents with motor issues. My first symptom was a panic attack. Dizziness followed, and it has never gone away. Things come and go all day long and vary in intensity, but nothing has ever vanished and I do not have clear cut or even remotely noticeable flare ups and remissions.

I'm petrified to say the least to go get another MRI. I fear that this time they will really dx me w/MS or something like it. Something irreversible.

I do not leave the house. I have been out maybe 5 times since June and 4 of those times were to go to doctor appts. My world as I knew it came to a screeching halt in June when all of my symptoms became 10 times worse and I acquired new ones that have still not gone away and seem to worsen as well at times.

I worry that because I went out drinking so much, maybe I contributed to this rapid decline that I've had...and maybe if I hadn't partied as much, I wouldn't be where I am today.

I have been on LDN for over 3 years...it doesn't seem to be doing a thing, and it never really did. I continued to get worse no matter what.

I do have brain lesions in the periventricular white matter. Impressions on my MRIs have stated anything from a possible demyelinating disease to things such as prior injury, ischemia, infection.

I'm only going to be 25 in a couple of months. I have zero quality of life and I'm afraid if I'm dx w/MS that I will just go completely insane. I have tried everything to manage my symptoms but nothing will do enough to get me out of the house. Knowing I had MS would kill me...because I know that the most I could do is try to prevent myself from getting worse, but I would also know I can't reverse what's already happened. I can't spend forever on my couch or in this house. According to everything I've ever read, they only use the CRABs on RRMS anyhow...but people w/PPMS can use LDN to see if it will work.

I'm not sure what kind of advice I'm looking for or if maybe I'm wishing someone will tell me to seek out this or that and get MS out of my head. But it's been in my head since I was 19, and it seems comfortably situated in spite of the toll it is actually taking on my mental health.

Thanks for listening to my rant...I admire everyone that pushes through this...if I am dx soon...I don't know how I will handle the RAGE I will feel towards all of the doctors who never listened to me. I will be so angry to know that had I started tx back then, these current issues would have never presented themselves.

Thanks again for listening...and I'm all ears now.

Jen

Post Edited (Jendays247) : 10/5/2009 11:32:37 PM (GMT-6)

Hi Gretchen,

Yes, I saw an MS specialist probably two years ago...symptoms weren't as bad then but the MRI still showed the lesions. He suggested nerve conduction testing but I never had it done. Otehr than that, I am pretty sure he said it was not MS too. I remember thinking...well, if this guy doesn't seem to be too worried - since he's a specialist...maybe I shouldn't be (?)

Hey Jen,

I am back from work and ready to respond more thoughtfully.  I also have never heard of a person having heart problems (pvcs etc) with MS.  I don't believe that PVCs and the like are an MS symptom.  Acute anxiety is not an MS thing either as far as I know. 

You definitely have something going on though if you have lesions showing on an MRI.  I would say, you need to go see the MS specialist again or see a new one.  One thing you need to make clear is that you want an explanation for your symptoms and for your lesions.  If the Doctor does not believe it is MS, then what is it?  I know that lyme can cause lesions and that is an avenue you have or are exploring.  Migraines also can cause lesions.  As far as I know, anxiety does not cause lesions. 

You should know that I have RRMS and I do not have any normal days.  I have what are called residual symptoms.  I have things I deal with everyday that are seemingly permanent.  Very few people with RRMS have "normal days".  I deal with chronic vertigo and balance issues, mild nystagmus, numbness, bladder and bowel issues, fatigue and cognitive (concentration) issues.  I take some meds for symptom control.  For example I take adderall everyday to deal with fatigue and cognitive junk.  That really helps me. 

So you could still have RRMS if you have MS at all. 

The jury it still out on LDN.  My neuro says it has been out there for 30 years but has not proven to be effective in slowing progression.  It seems as it may be effective for some for managing symptoms like fatigue, focus and attention, pain relief and general feelings of well being.  I am not holding my breath on that one. 

Also, MS is considered a central nervous system disorder.  A nerve condution test is usually used for peripheral nerves.  I would ask about evoked potentials instead.  The usual evoked potentials looks at vision, extremeties and hearing. 

What is keeping you house bound?  You do seem to struggle with a lot of anxiety about your health.  That may indeed be warranted but you might want to address that with a therapist.  If you are house bound due to fatigue, then see if you can a doctor to treat that fatigue.  Most doctors are willing to try provigil or adderall or ? for a patient with fatigue. 

Ok that is all I can think of right now.  See if you can't get in to see that MS specialist again.

Hey Jen,

Most people have some history of flares and remissions.  I do have a history of flares and remissions but my first flare was so nasty I ended up in the hospital with vertigo and balance issues so bad I was "wall walking".  My second flare was about 5 weeks later.  Then a third came 7 months after that.  I have since been in remission.  As you can see, I am relatively new to this disease. I was hit so hard, I was sure I was going to be very progressive and I did the most I could to learn about this disease.

One thing you said that makes me think that perhaps you don't have MS, is your comment about having what seems like an over-active nervous system.  Something like 70 - 80 percent of MSers have fatigue issues.  We don't have an over active nervous system, we have an underactive one.  We have so many neurons permenantly damaged by demyelination that signals travel slowly or not at all.  Evoked potentials for me showed a significant slowing in my lower extremeties and in my vision. 

This is caused by an over active immune system but definitely not an over active cns.  Now, this could still just be your perception of your symptoms.  I, again, can't tell you that you do or don't have MS.  It makes sense that your anxiety rises with your symptoms.  That is how it is for me as well.

Many, many MSers must take a stimulant or fatigue med to deal with that common symptom of fatigue.  I also have pain.  I have to be very careful to take any narcotic or opiate derivative late in the day.  Those tend to be CNS deppresants and I am nearly unable to walk after I take one. It helps with nerve pain and spasticity pain but it slows down my already very slow nerve signals to the point of being a falling risk. 

I hope this helps.  I truly hope you don't have MS.  You seem terrified of this disease.  It is certianly an icky one but many of us live with hope and joy.  You have been acutely ill for a long time!  I wish for you to get some reasonable answers and treatment.  Please keep us posted.  You are always welcome here.  We have lots of people here in limbo. 

Are you still being treated for lyme disease?  What is going on with that?  I know you felt the treatments weren't helping.

 

This is so weird...CNS depressants are the only thing that help me to feel somewhat normal...alcohol, valium, whatever it is...

I don't want to sound like I had a drinking problem, but when I would drink alcohol it was the only times in 6 years that I felt COMPLETELY normal. I mean no slurred speech, no gait problems, no shaking, NOTHING. Completely normal! Valium helps with all of this stuff too, but I'm sure I'm not taking nearly as much Valium as alcohol I was consuming...I used to want to drink before I did ANYTHING. I mean, I remember waking up one morning having to go to a funeral (this was just about 5 months back), and I knew I'd be seeing so many people I hadn't seen in a long time...therefore having a lot of conversation...plus I would have been standing a lot...and I thought - there is no way in hell I can pull this off without having something to drink. I would be stumbling, slurring, etc...so I had two glasses of wine before I left and I put another glass into a pop bottle and drank it throughout the funeral. GOD THAT SOUNDS AWFUL! But ya know what? I stood for the service, had plenty of conversation, and no one thought a thing - except maybe that I smelled like very tart grape juice? But no one said anything...I was smoking then too so I'm sure that was what they could smell.

Anyhow, not to be a traitor ;) but I do post on another MS board as well and I pretty much copied what I wrote here along with a few changes...people over there are saying I should see a cardiologist. I have thought this as well. I have heard of MS causing dysautonomia, but nothing like what I'm experiencing. I have skipped beats all the time and yesterday totally freaked me out...I'm sure my heart rate was under 60bpm. I'm just worried because I haven't heard of many heart conditions causing the cognitive deficits I experience.

Oh well, I guess we'll see...I'm about to make my list for the neuro for tomorrow.

What does everyone think about the possibility of this being cardio in nature and not neuro?

Thanks,
Jen

Hey Jen,

Your buddies over on the lyme board started a thread looking for you.  You are very loved!  That is a wonderful board and supportive board. 

OOoooh Jen!  I am sorry!  That sucks.  You have every right to complain.  Remember that medical treatment is a consumer affair in the US.  You can complain and pick a new one!