Lhermitte's Getting Worse

[davincidanes]

As I sit here in diagnostic limbo hell, I'm concerned that my lhermitte's is getting worse.  It was just on the right side, into my arm, trunk and leg.  Over the past few days, I'm now also feeling it into my right arm and trunk as well.  I'm very cautious about how I move my head at all because it's very uncomfortable.  Down the right side I get the shock along with burning, and down the right it's just the shock sensation so far. I did have a follow-up cerfical MRI on April 1st, and the result was that the enhancing lesions are unchanged since my last one in October.

I am currently taking a couple of medications that might help this, but possibly in too small of doses.  I don't know what to ask my neuro about changes or additions to consider.  I'm currently taking 50 mg of Elavil at bedtime.  I'm also prescribed 10 mg of Baclafen twice a day.

Should I ask for an increase of the Baclafen or Elavil, or should I ask for an addition of something like Gabapentin? I had a round of Solumedrol infusions in November.  Would it be prudent to talk about having
that again?

Any ideas or advice would be appreciated.  The Neuro Specialist appointment is not until June 1.

[davincidanes]

Much better than June 1st!  

[Joiedecour]

Great Linda! It sounds as if someone is finally listening to you. Great that it's such a short wait. Wishing you well for Friday's appointment, answers and relief.

[davincidanes]

Oka - Jen, it is.  LOL

Well, good news.  I got a call from Vanderbilt University Hospital today, too, and the specialist will see me on Friday!

Of course, I'm relieved... and nervous, but it's all good.

~Linda

[jensequitur]

It's like non sequitur, but it's Jen!

I've had problems with leg weakness and balance over the years - lesions in your spinal cord can cause problems with your sense of balance, to the point where you don't know what's up and what's down.

[davincidanes]

Thanks Karen & jens? (not sure of your name)  LOL   Anyhow, thanks so much for that explanation. It does make the difference between disease lesion and external trauma easier to understand. In mycase, the enhancing lesion is within the spinal cord, sooo....

Today I can only walk in drunken-type, baby steps holding onto walls, furniture, etc...  .

~Linda

[jensequitur]

Just my 2¢...

Enhancing/inflammation means that the tissues in the lesion have more water than the surrounding tissue. To put it another way, it's like a rotten spot on a vegetable in your fridge. It's wetter than the rest of the vegetable, because the cell walls have broken down. The hydrogen atoms are moved around on the MRI to detect areas with more hydrogen (i.e. more water.) All the various spin techniques (FLAIR, etc.) are just different equations for magnetizing the hydrogen atoms into a spin.

So if your spinal lesion is still enhancing, I would say that there's still some disease process going on that hasn't been calmed down by medication. Spinal damage looks different from a spine lesion on an MRI - it'll be an impingement upon the spinal cord from outside, not an internal lesion.

[4happygnomes]

Thank goodness they are trying to get in you in sooner!  I really hope the med and steroids provide some relief...I know what it feels like to struggle with the simple things, like walking..=(

Karen

[davincidanes]

Update: Heard from my general Neuro's nurse today.  They are going to push Vanderbilt a little harder to get me in before June 1.  They have faxed in a prescription for Gabapentin that I need to go pick up, and I'm scheduled for 3 days of IVSM starting on Monday.

I am looking forward to a little relief.

~Linda

[davincidanes]

Thanks ess and Alex.  I really appreciate the suggestions and support.

I will talk to my doctor about all this, and hopefully get on some meds that will help while awaiting the specialist appointment.  Then I will let him try to figure me out.  :)

Hugs,
~Linda

[essdipity]

Hi, Linda. I'm way out of my element here, so I hope others with good medical knowledge will also chime in.

However, and isn't there always a big 'however'?, as I understand it, the reason that MS lesions might enhance under gad is that the blood-brain barrier has been breached. (How's that for alliteration?)

I haven't heard that this is true for inflammation cause by injury, but it's something you might pursue, or ask your doctor, of course.

ess

[HVAC]

If the doctor does a neurological exam he can decide if it is muscle Baclofen or nerve Gabenpentin or probably both. What you describe is more of what I have which is caused by a neck disk. I have MS but I also have a bad disk in my neck. I have mpain down my arm into my hand it is worse than the MS at times. My neurologist sent me to the Duke pain clinic years ago. The doctor did a neurological exam and found I needed muscle relaxers and nerve pain medication. I have pain down my right arm and my MS is on the left. Baclofen did not work for me so I am on Zanaflex. Gabenpentin did not work so I use Trileptal. There are many options. I have had great success with the pain clinic.

I have had more trouble walking so the Neurologist is sending me to PT for a gait evaluation. I can hardly get out of bed.

Alex

Treating symptoms will not keep you from a diagnosis. I waited for a diagnosis because I thought once they knew it was MS they could fix it. They treat symptoms just like if you did not have a diagnosis.

[davincidanes]

Well, I just don't know... and of course that is why this is all so confusing.
If I understand correctly, inflammation can be caused by injury, therefore, will enhance.

I have had neck pain related to a car accident and surgery since 1995... surgery for cord decompression in 1997. Back then, it took me two years of PT to just have the strength to hold my head up and walk properly. As I've aged with ongoing athritic degenration, it may be the culprit to the worsening symptoms.  It's always been there, just getting worse.

Thanks,
~Linda

[Joiedecour]

Linda, I think enhancing means inflammation  and that's not trauma. Someone will correct me if I am wrong but I think enhancing only occurs with an inflammatory disease.

[davincidanes]

I'm getting to the point of just feeling helpless.  Not only is my Lhermitte's increasing, but so is the weakness and tightness in my legs.  I can't hardly walk, although I force myself to, even if I feel like I'm falling over.  

Considering how quickly things are deteriorating over the past 18 months... and apparently the same lesion(s) enhancing since my first cervical MRI, which was in August last year, I'm more wondering if this just isn't a continuing issue of my cervical spine trauma that I had 20 years ago. The simple activities of daily living causing repeated injury to the spinal cord... ie, enhancing lesion.  :(  The MRI's have however, shown old cervical and brain lesions, so I don't know....  I don't think this can be a relapse of anything.  It's likely from the trauma or rapidly progressing MS.  I may have skipped over a diagnosis of RRMS over the years completely.  So I don't know.......

I'm scared that I'm moving quickly to greater disability with no means  to stop it. The Vanderbilt specialist already has a request to move me up for an earlier appt. if available.  I will contact my general Neuro on Monday about the possibility of adding Gabapentin or increasing the Elavil and/or Baclafen.

I've had a cervical laminectomy in 1997 of C-2 thru C-7.  This may be the result of continuing arthritis and spondylosis in the cervical spine.

I think I may need to learn more about spinal cord trauma instead of possible MS.  Thanks for your comments and suggestions.

~Linda

[supermum_ms]

I was thinking the same as DD, but if you are saying that your cervical "enhancing lesions" are still enhancing (continually for over 6 months or again?), I would of thought the enhancement with Gad meant you were currently under attack and relapsing.

IF i'm not misunderstanding what your saying......it would seem to me, that enhancing lesions would warrant an appoint with your neuro now to discuss your options, not as scheduled 3 months after the MRI was done and after the relapse could of resolved. Have you called the clinic about possibly needing an earlier appointment?  

Cheers.......JJ

[doublevision1]

Baclofen is a muscle relaxer so I don't believe it would alleviate Lhermitte's. Gabapentin in conjunction with the Elavil may be more helpful. I personally wouldn't do another round of IVSM just for Lhermitte's. It's just something I live with every day, and it waxes and wanes in intensity. I only do IVSM for truly debilitating symptoms that are interfering in my life in a major way. It has risks and unpleasant side effects and becomes less effective the more you use it. If you do have MS, whether or not you treat the Lhermitte's will have no bearing on how the disease progresses.