To Patsy10

[Quixotic1]

Patsy , I can't find a post where you describe all your problems in detail.  Do you know if you have ever been diagnosed with upper motor neuron disease?  That is, problems which were clearly in the brain, brainstem, or spinal cord?  Or have you had  peripheral neuropathy, fatigue, sensory symptoms and pain?

I brought up all your 145 posts, but I can't read them all.  I did see at one point you were treated for Lyme disease, but it's not clear if you thought that ended up being valid.  I also saw a reference to blurred vision.  Did you have optic neuritis?

I ask these questions because I have recently become aware of a group of disorders called CIDP - Chronic Inflammatory Demyelinating Polyradiculopathy.  This is a group of autoimmune illnesses often sparked by infection that is characterized only by lower neuron disease - that is peripheral neuropathy.  the process does attack the myelin, just as in MS, but is peripheral instead.  There is overlap in the presentation with ALS (it isn't ALS, but may closely mimic it).  The point is many forms are VERY TREATABLE.  

I didn't know if you have already had this excluded.  If you did and it was some time ago, they are realizing that the spectrum of CIDP is much broader than previously thought and that a lot of people were excluded who actually did have it.

Here are 3 links:  If this is old news and long since "done that," I apologize.

http://members.shaw.ca/btillieribm/cidp.htm

http://millercenter.uchicago.edu/learnaboutpn/typesofpn/inflammatory/cidp.shtml

http://autoimmunedisease.suite101.com/article.cfm/cidp

The last is the best discussion.  Quix

[patsy10]

Thanks Quix for asking.  No I haven't had that ruled out as far as I know.  My symptoms are pretty bad...numbness, tingling, twitching, muscle pain, blurred vision.  When I walk it feels like my legs and brain are not connected and I have to "think'' about walking. These symptoms are present at all times.  It does not come and go.  I'm different every day.  It's always a surprise. It started in 2005 with sudden leg weakness, neck pain, hyperreflexia.  I was told it was compressive cervical myelopathy and had a spinal fusion of C5-6.  I never believed it was my neck as I had a similar syndrome in 1993, 8 months following 3 bullseye rashes.  I got worse after surgery which proved  my point that it wasn't my neck. The surgery set it off like a wild fire.  I've seen 5 neuro's had numerous tests done to rule out MS....  LP, multiple MRI's of brain and cervical spine, evoked potentials, emg etc.. all normal.  They say my neuro exam is normal (it wasn't when I had the hyperreflexia bad).  When I walk my legs weaken and my left one drags a bit.  It seems to be coming from my butt cheek down the legs. (lumbar MRI normal).  I have sore tender areas all over my body esp. ribs, neck, butt cheeks, back.  My muscles hurt all over. MRI's have never shown optic neuritis.  The only diagnoses I've gotten are CFS/FMS, cervical myelopathy.  Did I have lyme?? I don't know but I have never tested positive for it.  I clearly had the rash.  It's funny you asked about me.  I've been reading your posts and wanted to ask how you finally were diagnosed with MS.  Do you have lesions?  Like you said, there's no way I could read all your posts.  Thanks!

[patsy10]

Oh and my symptoms are more sensory than motor....tingling, burning, hot and cold sensations, numb feelings.  I also have feelings of water splashing, dripping  on me.  I'm always looking down on my arms and legs to see if it really water or a paresthesia.  I'm so frustrated.  No one believes me.

Patsy

[Quixotic1]

I'm taking a break from bill-paying (Easy come and easy go - but mostly easy go, alas..)

Where do you live, US?  UK?  I wish I could remember everyone's details.

I too have had sensations where it felt like water hitting me.  In my case it was the sudden sensation of warm water runing down my right inner thigh.  I kept grabbing myself , sure I was being incontinent.  What a sight!! lol

I wrote up my whole story a couple times:  Here is the post from the MS forum:

http://www.medhelp.org/posts/show/1083

I'm awaiting the results of a new MRI of my spine.  I'm having L leg zaps with every flex of my neck, L'Hermitte's Sign.  It's becoming increasingly disturbing/painful.  I keep gasping, and this frightens my family.  It is easier when I am alone and there is no one to worry.  They're looking for a new spine lesion.  It would be great to have one more positive sign.  That would "nail the diagnosis."  Hey!  We could have a "Diagnosis Party!"  I suspect it will be normal like most of my tests.  My only "salvation" has been the spasticity, hyperflexia with clonus, and the incontinence AND finding a good MS doc willing to see the whole process in one picture.

CIDP (BTW, did you read those articles?  What did you think?) has normal MRI's and LP results.  The clues are in the nerve conduction studies and some serologies. How long ago were your nerve studies?  And how thorough were they? Also the diagnosis of optic neuritis is made by Visual Evoked Potentials, not MRI.  If you have not had that, you should.

Have you been tested for Myasthenia Gravis?  It can present with a diffuse picture of neuropathy and blurred vision.

The hyperrelexia speaks to upper motor neuron disease., so maybe it isn't you.  CIDP is more likely to have absent reflexes.  Oh, Well.. I'll keep reading.

Why is it that you do not believe fibro, at least in part?  It is a real entity, suffered by 1000's.  Is it the nebulousness - the sense that is is just not a satisfying explanation?  You have a lot of muscle pain.  Have they measured a CK (creatine kinase) or a Muscle-Specific CK, or serum aldolase during a bad time?

Have you been seen by a good reputable center - like the Cleveland Clinic?

We'll talk later.  Quix

[patsy10]

Did you have lesions on MRI?  You sound like you've been through the ringer too.

Yes I had VEP's and somatosensory.  Normal.  Those were done at Cleveland Clinic in 1/06.  I live in Ohio. My EMG was done 12/05, six months after it all started.  This is what I want repeated now.  I was only a few months into symptoms in 12/05.  My CPK was normal as well as aldolase.  The only myopathy test that was abnormal was pyruvate.  I didn't see the result.  He just said it was slightly elevated.  These labs were recent.  I also had a toxic B6 level but he didn't know why.  He did not repeat it.  I had a repeat brain and c spine MRI in the past few months which were normal except a small amount of Chiari 1 malformation and a small meningioma touching my cerebellum.

Unfortunately, most of my bad experiences with doctors were at Cleveland Clinic.  They were rude and arrogant.  I even saw an MS specialist there last year.  He said no MS.  Did think symptoms were consistent with lyme but said no lyme after the test was negative.  He seemed ok at the time until I read my chart later.  FMS/CFS, somatization.  I was furious.

I saw a fibro specialist.  I did have 14/18 tender points.  I think I have way too many symptoms for it to be just fibro.

Patsy

[patsy10]

Tomorrow I'll pull up your old posts and read them.