Neurology Visit - Still No DX

[Todd36]

Is MS generally associated with SIGNIFICANT neuropathic pain?

i've posted in this community before and some of you may remember that i've been dealing with full body fasciculations, neuropathic pain, muscle spasms, and cramping primarily on the left side of my body but occasionally on the right, and it flared up the second week of December.  That said, I've dealt with lower back pain, shoulder pain, abdominal pain, chest pain, and headaches that have oscillated over the last 1.5 years.  These symptoms come and go and I generally have any two to three of them happening at once.

I had my first neurology appointment last week where the Dr performed the standard bedside neuro tests - all of which were normal.  We reviewed my lumbar (done Dec 08) and brain (done April 08) MRIs, both of which were normal.  We looked at the results from my blood work and EMG that were also was normal.  Because I've been experiencing symptoms that have been affecting my entire body, the Dr said there was too much "noise" with what i've been experiencing to dx me at this point, and he suggested I monitor things for a month to identify the "primary" symptoms.  He did say that when people my age come to see him with symptoms that I described, he typically red flags MS as a possible outcome, BUT he said MS doesn't typically manifest with significant PAIN.  Is that true??

Thanks in advance for your opinion.

[Todd36]

Thank you very much for your input and suggestions.  It's comforting to know I'm not alone (although I would never wish this on anyone!).  Some of the symptoms I've been dealing with have resolved but others (i.e., fasciculations and calf cramps/fatigue, with the latter generating moderate pain) annoyingly persist.

To answer your questions/statements:
I will definitely get a lyme disease test!
I don't know the resolution of the MRIs I've had - what's the standard?  How to I find out?
I was vaccinated for hepatitis A and B in 1999
The inflammation markers in my blood work are normal

Thanks again!
Todd

[Katesnon]

I am new at this and definitely no expert on anything.  I do have many symptoms and had an inconclusive MRI.  I do have pain.  I get this electrical feeling pain from my right jaw all the way down my arm into my thumb and 2 fingers.  Some times i get one or two, some times 15 or more in a row.  I jump each time.  Just like an elecrical socket was on my fingers.  I have burning type pain also, in my legs.
From the posts I've read there sees to be so many symptoms, unless you have an MRI that shows lesions, then, I guess the Dr will just be guessing too.

[MostlyShell]

Everyone here has given you some wonderful things to think about.  Your PCP should be willing to order whatever tests you feel are necessary.  If you have gone on this long without diagnosis and are suffering, he/she should be more than willing to try anything.  I noticed that you said you had a brief stay in Thailand.  
Well, before I go into that, I'd like to say that I have MS and have daily pain.  Not only from MS, and some from complications of MS.  But, it is a daily thing.
I'd like to share with you about my sister-in-law who about 10 years ago visited Taiwan.  She had no children or husband and a wonderful career.  About 6 months after returning she was incredibly sick and lost her job.  She found out after much looking that she had contracted Hepatitis A from probably raw food she had eaten.  But, something funny happened.  it's like the hepA triggered her to have Rheumatoid Arthritis.  She now sees a rheumatoid doc and takes Humera and a host of other meds.  I can't seem to think it's of no consequence of her HepA.  Kind of like when they say that something like an illness or some trauma triggers us to have MS.  
Also wanted to mention this.  I had one neuro that said he found nothing on the MRI. And he was at an MS clinic.  6 months later at a new neuro, different stronger MRI machine, found many lesions.  Do you know the strength of the MRI machine they used?  
One more thing, I don't know the name of the test but my rheumie (I have EDS) checks me frequently for "inflammation".  I guess to rule out rheumatoid.  But, when we get back a negative result, we know it's nerve pain from MS.  I also have found that Cymbalta or Lyrica help some with the nerve pain.  It helps with some of it and some it doesn't.  I have also heard of other people with MS taking neurontin.  They love it!  I personally can't handle it...I'm too sensitive to medicines.
I don't know if any of this, or anything anyone else has said will help, but I'm praying for you and hope for the best.
MostlyShell

[wonko]

Hi Todd,

After about 1.5 years of lots of progressive discomfort and confusion, I'm in treatment for Lyme.  As I was reading your situation, I thought it sounded possible that you are also afflicted.

Don't let anyone tell you that you that Lyme is easy to diagnose, or easy to rule out because of factors such as where you live, or that it can't "do that," where "that" may be just about any symptom under the sun.  I was told over and over again that I didn't have it, and the length of time that passed only allowed my symptoms to worsen and complicate my treatment.  I do live in an endemic area, but never go outdoors, 'cept the necessary distance between my car and buildings.  I don't recall a bite or rash.

Anyway, I don't mean to turn this into my story.  In regards to your question about how to minimize cost, and keeping in mind that I'm just the messenger, I don't think you'll have much luck!

Lyme is tested for in two stages.  The first test is called ELISA, and it is a screen.  If it is negative, most doctors will not then go on to do a Western blot.  As Quix mentioned, it'd be great to get two Western blots done, since there is a lot of murky waters surrounding the different private and standard labs.  While I agree that would be ideal, I was not able to afford that.

I had negative ELISAs in Jan and July '08, and I had an LP to rule out MS that also tested for Lyme and came back negative.  My insured physician refused to order a Western blot.  So my path was to find a doctor in my area who specializes in Lyme and other difficult to diagnose cases.  He doesn't participate in insurance, and the tests he ordered were not through labs my insurance covers.  

My Igenex Western blot was positive for two IgG bands and one IgM band.  This makes me negative by CDC criteria, but IgG positive by the Igenex lab standards.  I also tested positive for Bartonella, a co-infection (another bug the tick can give you) and am assumed to have  Babesia, another co-infection, based on symptoms.

So it was not cheap.  On top of that, I became too sick to work full time, and had to reduce my work schedule to accommodate.  Since my diagnosis came from a non-standard doctor using non-standard labs, I am pretty much dealing with this on my own.  I hope to get well enough to resume full time work before I face serious financial woes.

However, I'm sure my out of pocket expenses pale in comparison to the several MRIs and other tests I had done earlier in '08, and being in treatment that may make it such that I can put this fully behind me is priceless, if you'll allow the cliche.

My case was weird, I didn't present with "normal" Lyme symptoms.  Because I had a lot of neurological symptoms and an abnormal brain MRI, I was deeply concerned about MS.  I also had attacks and remissions early on, but eventually my problems stuck around and just slowly got worse.  

The people on this forum helped me a lot along the way figuring out what the heck was going on, and I've stayed friends with the people here and still check the posts once in awhile.  I'm a relative newbie to Lyme, only diagnosed in Dec.  There is a nice Lyme forum on MedHelp as well, it's not as extreme as some other sites are, which makes me more comfortable.  A great book on the topic is "Cure Unknown" by Pamela Weintraub.  A great documentary is "Under Our Skin."  Both have websites that you'll easily uncover if you search the titles.

Good luck in figuring out how to pursue answers and I hope you are well.

[Todd36]

Hi Quix and Udkas,

Thanks for weighing in on the thread.  Gosh...I never thought I'd get so much help from stangers.  I truly appreciate!!

I must say I really like Quix's logic:

"Your presentation and age already made him [my PCP] think of MS, but he can't nail it down - so if this is MS, it is atypical.  Then he says presentation of pain is not typical - but if this is MS, it is already atypical."

That makes sense to me…

Regarding my spina bifida occulta, wouldn’t the radiologist be able to detect spinal cord tethering in the MRI films?  That seems like something they would have checked, no?

The description of TM sounds similar to what I've been dealing with, especially the onset of lower back pain followed by leg pain, loss of sensation, etc., but in the description I read it says it usually only happens occurs once, and I've had pain in my lower back and shoulder intermittently for a while now.  TAlso, the markers in my blood work for inflammation were normal, which probably won't be the case if I had TM since it causes inflammation in the spinal cord, right?  If I did have TM, the affected area in my spinal cord has to be the cervical spine, as I have had problems in my shoulders, arms and hands.  And from what I've read, TM will affect the spinal cord area where the inflammation occurs and all lower segments too, which would make sense with my condition b/c I’ve had pain all the way to my toes (sometimes bi-laterally).  The timing of things, however, just doesn’t seem to add up.  AHH!!!  This is all extremely complex, but TM is definitely another thing I'll run by my drs.

Okay...here's a question for you: how can I just get the test without having to convince my PCP that I should have them?  For example, if i wanted to get tested for lyme disease, i have to make an appointment with my PCP and negotiate with him about weather the test is appropriate and explain all my symptoms.  Not only do i have to pay for the office visit but i also have to pay for the test, and if that test requires that I come back, i get nailed with more office visit fees.  Staying healthy is expensive!  Any thoughts??

Thanks again for all your help.

Best,
Todd

[Udkas]

Hi Todd,
I get a lot of pain, at one stage that was my biggest problem managing the pain. I get burning but also cramp like contractions in my thighs and the painless twitches.  I have read where this is common with diseases like TM which is what I am being evaluated for at the moment by neuro number 2. On most of the info I have read about TM and I have read a lot lately it states pain is a fairly big factor with that and describes the cramp contractions.

My first neuro said that PAIN is indeed part of MS and also said that my cramp contractions were neurological and he initially thought I had MS (probable MS) but because I went so long without worsening of symptoms he then changed his mind but a large part of my symptoms were sensory and PAIN. I did have some other problems as well.

I don't know anything about Lyme as where I live you can't get it.. so at least I don't have to think about that one.

Goodluck, I hope you get an answer and also just as important some relief for the pain because pain can be just as disabling as weakness and many of the other symptoms and chronic pain can be very difficult to live with.

Udkas.

[Quixotic1]

Hi!  I have been reading this thread and Lyme disease popped up strongly in my head.  It does occur in the western states, just not as heavily as in the east.  The diffuseness of your pain and the fact that it so often affects both sides, makes me urge you to be seriously studied for Lyme.  This means at least two Western Blots at different labs - with reporting of the different band results.

What the very fleeting numbness you describe indicates to me is that it may be more from an infection or metabolic cause than from MS, as MS is from real damage to the nerves and wouldn't be so fleeting.

The diffuse fasciculations are also frequent complaints of people with Lyme.

I also agree that the possiblilities are much greater given your extensive travel.  I'm sure that the esteemed doctor has run the basic tests to rule out MS mimics.  there are a good dozen of these.  The muscle twitching and cramping are more indicative of a "muscle" source than a nerve source.  

Given the (albeit minor) spina bifida occult, it is important that they look at your MRIs for any signs of a Chiari malformation which can present with some of the symptoms you have.  When there is a defect in the development of the spine, sometimes the cord gets stuck or "tethered" and tugs down on the brain.  You might look up Chiari malformation and tethered cord.

As for MS, it can have 1001 mainfestations.  Your neuro is clearly keeping it in mind.  The "noise" he refers to are all of the symptoms you complain of.  I think he is requesting that you try to focus on the ones that are most destructive to the quality of your life, to see if he can get a clearer picture of what might be happening.  This is often a good way to approach a confusing picture.

******

Okay the pain issue.  PAIN OCCURS COMMONLY IN MS AND CAN BE SEVERE!  I don't have enough experience to say that "presenting with pain is or is not common.  Your neuro's thinking confuses me.  Your presentation and age already made him think of MS, but he can't nail it down - so if this is MS, it is atypical.  Then he says presentation of pain is not typical - but "if this is MS, it is already atypical."  He should be thinking atypically as he continues to consider whether this may be MS!

Certainly, from the experience with this forum and with people here with confirmed MS,  PAIN OCCURS COMMONLY IN MS AND CAN BE SEVERE!   I do not understand why this is not accepted.  Where are these guys getting this belief???  Please ask him to help you with the pain.  Diagnosis is not his only duty to you.  Palliative care is his responsibility also.

I will be watching what is happening to you with interest - for several reasons.  Despite Lyme being less common, I do think you should pursue the diagnosis for completeness sake.  I will ask the members of this forum who have Lyme, and who have good scientific minds, to weigh in.

Stay with us,

Quix

[Todd36]

Hi Elaine and JJFL,

No, I've never been checked for lyme or had my vitamin D3 checked.  I've read a lot about lyme disease on MS sites, and although I'll look into it, i just don't think it is as common as people make it seem to be, especially out West where I've spent most my life.  I was an avid outdoors man at one point in my life and I have never known anyone to get lyme disease, even those who would get ticks on them from time to time.  The probability seems awfully low in my opinion.

Yes, I do have spina bifida occulta and I have suffered from migraine since elementary school days.  Two drs have told me that I should be experiencing as much pain in my back with spina bifia occulta.  Plus, mine is so minor that it is really hard to see on the MRI and x-ray films.  As for the headaches I've been dealing with over the last couple years, they just feel different than the migraines I'm used to getting.  For instance, there's no ora associated with them, which i always get when i have migraines, and i'm usually really sensitive to light with migraines, but not with these headaches.

There is a small possibility that I might have picked up something while living/working overseas.  Some species of malaria can lay dormant in the liver for up to 4 years, but I haven't been in the Western Pacific in probably five years and malaria doesn’t cause sensory problems.  There are some other strange infections/diseases there but they are pretty rare.  A close friend of mine who was in the Peace Corps with me was recently dx with an “undescribed” metabolic myopathy.  His ANA and CK in his blood work were off the charts, but mine are normal, so the likelihood of me dealing with what he has is low.  I was in Bhutan and Thailand last October, so I could have contracted something from there, which may have triggered my December flare up.  The problem with diseases from other countries is that doctors in the US don't know how to dx them and aren’t familiar with them, so usually it involves going to a tropical medicine specialist – something i'll do when my neuro runs out of possible options.

The one thing that truly baffles drs is that I lost sensation in both my hands and feet and my forehead went numb for only about 45 mins to an hour the day I went to the ER - which doesn't really make sense from an MS standpoint but it does suggest something is wrong neurologically.  Plus, muscle twitching, cramping and spasms also suggests something is going on neurologically.

Thanks again for helping me think of other possible outcomes.  I'll keep searching until something is found, or until i've exhausted all options.

Best,
Todd

[JJFL]

Hi Todd,

I looked at pics from Papua New Guinea and it definitely looks like a place for an adventure. I also saw where they have a big problem with infections there. .You will have to tell me if you if it is as bad as I saw on some sites. Have you been checked really good for infections, They can hide...

Lyme is also a good one to look for.  I saw where you have a spina bifida occulta on the Wikipedia site it says in part;  "However, other studies suggest spina bifida occulta is not always harmless. One study found that among patients with back pain, severity is worse if spina bifida occulta is present."

You also say you have migraines, I found a site  http://www.migrainepage.com/dcforum/discussion/23282.html in it the second person to post says ICE is the best for this type pain.  Now this may not be the problem but at least you could try this and see if it helps.

JJFL....

[monotreme]

Have you had a Western Blot test for Lyme?  Have you had your vitamin D3 level checked?

Elaine

[Todd36]

Hello JJFL et al.,

Thanks everyone for your help.  I truly appreciate it!

First…the fun stuff.  I severed with Peace Corps in Papua New Guinea and worked in the region afterwards for about 5 years.  It was a great time and I love the Western Pacific!  I never felt more alive as I did when I was living in Papua New Guinea – everyday was such an adventure!  I miss the smells, sights, people, food, the ocean, watching my back for devious thugs, etc....

Now, back to the not so pleasant stuff…Most of my headaches are located on the back of my head near my neck.  I've had them so bad that I thought my head was going to pop!  That's why I had an MRI and an MRA on my head in April 08 - both normal.  You’re SPOT ON with the back pain.  I can feel the muscles spasm like mad and the pain associated with it; however, the pain in the left shoulder is like burning pain, not from spasms, which I've experienced maybe 6 times and lasts for maybe two to three weeks.  It's not muscular as I can exercise and it doesn't aggravate it.  Oddly, the pain in my lower back felt like it moved into my legs around xmas.  I experienced spasms in my feet that stopped me from walking for two days.  I thought I was going to have to use a cane but things started to improve with rest, percocet, steroids, and the love and care from my wife.

No evoked potentials test done yet.  I'm going to request a cerival spine MRI next week and see where that leads.  I just want a dx so i can is correct or treat whatever I'm dealing with - it's super frustrating!!!!  Last week I had my vitamin B12 check as the Dr thought I could be suffering from that, as I’m vegetarian.  Unfortunately my B12 was normal – I was hoping I was deficient as that’s an easy fix.  So…back to the drawing board!

I haven't visited the local medical university in my city yet.  They have an MS center but I'm not sure how good it is.  My neuro has stellar credentials and was thorough with my bedside exams.  Although I know a few people on this forum have had not had good experienced with him, I’ll probably continue with him for a wee bit longer to see if he can drum up a dx.  

I'm doing much better today.  The muscle twitching is slowing down and the cramping is concentrated in my calves, but it’s manageable.  The buzzing in my legs is nearly gone and now seldom persists for long periods, so I'm okay with that.  I've been doing yoga and swimming almost every day since Jan 1st - I refuse to let whatever I'm dealing with get the best of me.  All that said, I'm not back to 100% and I still don't know what I'm dealing with.  I’ve accepted the fact that whatever I’m dealing with is likely progressive and will persist in some form for the rest of my life.  I just feel bad for those people who are close to me and will have to deal with me while I manage my condition.  I can only wonder what’s next…

Thanks again for all your help.

Best,
Todd

[JJFL]

Hi Todd36

Nice to meet you..

I am DX with MS unusual presentation w/ Painful Spasms. Now here is my standard Public Service Announcement...just because I have this doesn't mean you do.   It means that, Yes significant pain can happen in MS but doesn't typically .  

I have experienced such SIGNIFICANT neuropathic pain that all I do is scream, I have asked nurses to cut off my legs and worse...I have experienced  a lot of your symptoms and my Left side is the most affected.

The lower back pain, shoulder pain COULD BE from the spasms( My arms and legs and sometimes my torso will go all over the place.).  it depends on how bad they are. Abdominal pain, Chest pain,COULD BE stress. Don't take that the wrong way,  As I tell people, If your body was doing what mine does, you would be stressed to..  The headaches depends on where they are and how bad they get?

I see all the test that have been done but did you have the Evoked Potentials done yet? Where in the Peace Corps did you serve?  I saw you have spent a lot of money trying to get to the bottom of this. Have you been to the Universities in your area.....

Peace....

JJFL...

[Lulu54]

Hi Todd,
You want to hear a real uproar on this forum, just say "people with MS don't have pain" and watch out!  That is such a medical misconception, and is battled all the time by MS patients with very real pain.  

As I understand it, it used to be commonly accepted that MS doesn't cause pain, but that erroneous interpretation has been chucked out the window.  The pain was always blamed on something else.  

Elaine's suggestion for pain relief is a good one. Look for some pain relief and the hope your body settles into a quieter pattern with symptoms that your neuro feels comfortable working with.  

My best,
Lulu

[monotreme]

My husband who is diagnosed with MS has significant nerve pain.  He went on Cymbalta which has significantly reduced the pain.  Maybe your primary doctor could prescribe it to see if it helps???  

Good Luck
Elaine