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

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Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 10/5/2009 10:28 PM (GMT -7)   
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)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 10/6/2009 6:17 AM (GMT -7)   
Hi Jen,
 
I remember you very well.  I am walking out the door to go to work but I wanted you to know I read this.  I will come back and respond as soon as I can.  I am sorry you have suffered so long.
 
Have you seen an MS specialist?  If you get a chance, call your local MS society.  They can point you in the direction of a good MS specialist in your area. 
 
More later.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 10/6/2009 10:15 AM (GMT -7)   
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 (?)

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 10/6/2009 12:49 PM (GMT -7)   
I also wanted to add...besides ppms, what else can present and progress like this? I take b12 every day and it helps with my focus and attention...sometimes it helps with random things like speech and strength, too. My levels were low normal a few years ago but since I've been taking the sublingual (3mg/day), they shot right back up to 1100s.

I have read everything about possible differentials and the only thing that makes sense is the ADEM because I had a virus two weeks before the onset of all of this...except nothing was terrible and acute and the progression has been too slow. I would think they'd be able to see that on my MRIs over the years too.

I'm totally lost. Sometimes I'm sure it's MS and other times I am convinced it must be something else because I just don't fit in that box. My symptoms do...but my disease pattern and progression does not. Another thing that throws me is my cardiac sx...I get very slow heartbeats out of nowhere...sitting, standing, laying...(I'm experiencing this right now so I'm editing my post because I forget about it when it's not happening). I don't hear many people with ms talking about heart problems. I have PVCs and other random sensations in my heart.

?

Post Edited (Jendays247) : 10/6/2009 2:08:05 PM (GMT-6)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 10/6/2009 4:59 PM (GMT -7)   
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.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 10/6/2009 6:17 PM (GMT -7)   
Hi,

I am using a phone so I am not going to worry about punctuation.

Gretchen - did you have documented flare ups and remissions in order to be dx?

I had migraines with aura as a child and have had two as an adult so my neuro thought initially that was the cause for the lesions.

I cannot tolerate any type of stimulant so the meds you mentioned are absolutely out of the question. Sx go haywire even with caffeinated pop. Coffee is a very missed beverage. I also do not have fatigue or pain issues. What keeps me at home are the difficulties walking because of balance problems, the leg weakness and the inability to concentrate/other cognitive issues.

Anxiety is only a problem when sx flare. I know it was my presenting sx but I have learned to control it better than at the beginning.

I did have VEPs done and they were normal, but barely.

What strikes me is that Valium helps with all of my sx even when I'm not anxious. For example if I am having trouble concentrating or my speech is slurred I will take a piece of a pill and within minutes (I let it dissolve under the tongue) things are significantly better.

All this really tells me is that my nervous system is overactive...but why? What causes this to happen? If it were something else, a cns depressant such as Valium would not alleviate anything. I could make sense of it if anxiety always accompanied this stuff but it doesn't. Some days I wake up and am so shaky I need part or half of a Valium before attempting anything.

I guess that is all I have to say for now...I just can't make sense of it at all. Everything I have read about rrms said that you had to have clear cut attacks and at least some amount of remission. And like I said, one day I just got sick and sx have acquired over time leading up to today. I wish I knew what else can cause these types of sx...it seems to be attacking every part of my body. The heart stuff seems electrical and I'm going to mention that to the dr when I see him.

Let me know if you think of anything else.

Thanks,
Jen

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 10/7/2009 6:44 AM (GMT -7)   
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.
 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


dianna30
Regular Member


Date Joined Mar 2009
Total Posts : 90
   Posted 10/7/2009 8:59 AM (GMT -7)   
Gretchen,
 
I am so glad you mentioned the difficulty you have with CNS depressants.  I was just talking to my neuro's nurse practioner about that last week and she said it had nothing to do with my MS.  Good to know I'm not as crazy as people think I am. :)
 
Jen,
 
Hang in there.  Keep after those doctors until they figure out what is wrong with you.  And try not to be scared of MS: there are treatments available to help your quality of life.  Having a diagnosis and a treatment plan should go a long way toward relieving your anxiety...it's much easier than being in limbo. 

Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).

http://diannaschnabel.blogspot.com/


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 10/7/2009 10:27 AM (GMT -7)   
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

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 10/7/2009 6:46 PM (GMT -7)   
Hehe........you traitor!!!!
 
Jen!  I am so glad you are posting on other boards.  I am not all that experienced with all this.  You need as many opinions as you can handle!  Hopefully someone will have some advice that sends in you the right direction. 
 
I have no idea about whether this could be heart related.  I wouldn't discout anything.  Keep looking!  We will be here with you while you search.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 10/8/2009 6:15 AM (GMT -7)   
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. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 10/8/2009 5:38 PM (GMT -7)   
Well...it's been 10 hours since my appointment...and I'm still in shock.

The doctor (who I have only seen once before and he did not leave a big enough impression on me to remember him) came in the room...I handed him my list of sx since the last time I saw him, claiming that my memory often fails me so I wrote everything down. I told him I took one Valium before coming in because otherwise I would have been really shaky and sick to my stomach basically. Here is how it went:

Dr.: Who is your heart doctor?
Me: I don't have one.

::Checks my reflexes and makes sure I can feel the vibrations with that tool they use...has me stand and walk literally three steps in one way and three in the other. Two steps on my toes and two on my heels. Sit down.::

Dr: You don't have any of the major illnesses that I can help you with.
Me: But I can't walk...
Dr: Well, you 'can't' walk' but you CAN walk.
Me: What?
Dr: Clearly you have generalized anxiety disorder, and your primary care doctor seems to be dealing with that appropriately.
Me: But don't you think I need another MRI?
Dr: YOU HAVE A LONG HISTORY OF MRIS WITH NOTHING ABNORMAL!
Me: But don't you ---
Dr: (puts his hand up in front of me) MA'AM. I CAN'T HELP YOU. (opens the door) GO TO THE FRONT. (walks out and before I could even finish my sentence he was already in the next room greeting another patient)


I wheeled MYSELF (my sister was with me) to the reception area and said "He didn't even listen to me...he cut me off and walked out...I'm not paying for this I'm sorry...he wouldn't even listen..." My sister is saying the same things. They said okay and walked us out since we had their wheelchair. I made it just outside of the office and before the elevator and I started sobbing hysterically...ya know that cry where you can't catch your breath? Yeah, that was me.

I'll be filing a formal complaint.

I am so stunned and I almost feel traumatized...I've never been treated that way in my life.

It was surreal.

Post Edited (Jendays247) : 10/8/2009 6:42:20 PM (GMT-6)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 10/8/2009 8:54 PM (GMT -7)   
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! 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 10/9/2009 3:46 PM (GMT -7)   
Went to my PCP today and I just have to say that my PCP makes up for any awful doctor visits I may have ever had. She is so wonderful. She listens no matter how long I need to talk (and today I wasn't even scheduled - she said she had been double and triple booked all day!).

I wasn't anxious but for some reason my heart was just racing. She told me not to feel bad about taking Valium when I need it - for WHATEVER neuro stuff it helps with. Also, she ordered the brain MRI for me per my request.

She wanted to do an EKG...the nurse said the machine sometimes is really weird so after the first one they wanted to repeat it on a different machine...for some reason I thought it was going to be okay, but it wasn't. It showed an irregular heartbeat which I already knew I had based on me constantly checking my pulse, and so they want me to get a holter again. It has been probably two years since my last one, but the heart stuff is much worse now. I'm sure something will show up this time. The only problem is that I have to wait until Monday to get it because I have to go directly to the hospital cardiological institute since my PCP doesn't accept my insurance. No matter what, I'll always go to her. It's well worth the money.

She also did a ton of blood work...off the top of my head...metabolic panel, thyroid tests, folate, b12 (which will be fine even if it truly is low because I have been taking 3000mcg daily), CBC...I know there was more but I can't remember right now.

We shall see...I just hope I don't end up in the ER this wknd with all of the heart stuff!
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