Myelitis now???

[allium]

Hi folks.

My numbness has increased over the last couple of weeks, now moving up my right arm past the elbow, my right leg past the knee, partially my left leg and arm, part of my scalp, and my whole face.  It's not completely numb, but certainly distorted.  I have this numbness in my mouth, throat and face since last year, but it suddenly started to increase as I have said.

The optho-neuro I have been seeing (who has alternately said I have a virus, a compulsive disorder, sarcoidosis, needed Valium for my symptoms strictly from "stress", and a possible autoimmune) now gets the idea that this could be some sort of myelitis.  He ordered the same moldy blood tests that I have been getting all along (neg), and wants to do a lumbar puncture.  In his office . With no sort of anesthetic.  Like a bee sting, I'm told. 

Can anyone relate to these symptoms possibly being myelitis?  I am still undiagnosed with SjS or any other disease, but have cervical disc herniation, bone spurs, sicca, GERD, lots of pain, hearing loss, and white matter brain leisions.  And, perhaps something else with my spine now. Or, it could be a progressing peripheral neuropathy.

If someone has had an LP for similar problems, I would be interested in what your experience was. Esp. without any numbing agent ahead of time.

I am pretty scared by these course of events, and further afraid I still have no doctor competant to treat me. 

Thanks for any help.
Sheila

[Scottietottie]

Hi Sheila

Wow - you've been going through it! With white matter brain lesions I'm actually surprised he never wanted you to have a lumbar puncture sooner.
I've only ever had one and it was done on a day visit to a hospital. There was no anaesthetic involved though. I can't say it wasn't uncomfortable but they let loose a couple of new doctors on me (the equivalent of interns I think)Anyway - one had never done a lumbar puncture before and it took them 4 shots to get any fluid out. They blamed it on me being old. They said it made my fluid more 'sticky'. I was about 36 back then. Grrrrrr! If your doc does the procedure on a reasonably regular basis in his office - your experience will probably be better! I found it uncomfortable but not painful. Didn't make me feel like yelling or anything.

I believe its importnat to be able to lie flat for about 2 hours after it though as if you move around too quickly you can get an awful headache. Again - I didn't but I've read that some people do.

Take care - Scottie 

[wednesday mc haggis]

Allium

   ive seen many LP done and its was always without local aneasthetic, ppl like scottie says seem to be uncomfortable, but not screaming agony.

    I am so sorry i have no ansers for you, all i have is my best thoughts and wishes being sent your way, so sorry youve been having a time of it like this, and docs aint given you any difinitive answers, id dare them to be stress free with all this going on, but to say its all down to stress, beggars beleif, stay strong honey and keep up posted

T x

[Stillinlimbo]

Hi Sheila,
I was going to bypass this post, but, had to come back to it and comment . First , I think you need to find a new doc. And as for the LP, I work in a hospital, have worked in private practices, and have had alot of health issues, so, my point is, I have never heard of an LP being done in the office. I have had 3 done. All in a sterile hospital, all with an injection of novacaine first to numb the area.  In my opinion, I would have the LP, but not in his office. My best experience with my LP's was when it was done by an anesthseoligist as this is what they are good at, as opposed to having a radiologist, or medical dr do it.
Good luck sweetie
Cathy

[Stillinlimbo]

Also, an after thought, this procedure must be done under very sterile techniques. One would worry just how sterile a doctors office room might be, or not be?
I'd seriously ask to be sent to a hospital, or outpt unit to have this done.
Cathy

[hoping]

Sheila,

This does sound like myelitis, similar to my case.  With your other symptoms, it could be SjS with now neuro symptoms.  I've had about 4 LPs, they are not hugely painful, depends on who does the procedure and whether they are a resident (newbie).  I've had them and similar problems with multiple jabs.  I finally suggested I sit up and lean my whole body forward and this worked much better than lying on side, especially if you are overweight.  Do not have an optho-neuro do this. They are eye specialists. Have it done in a hosp. and stay flat afterward for as long as possible.  I have had it done by a neurologist and a radiologist under X=ray.   I've had the spinal headache 2 or 3 times and it hurts like crazy when you sit or stand, so stay as flat as possible for a long time after the procedure to let that hole seal up.  And avoid sneezing (yeah right), bearing down hard on the toilet, coughing hard, etc. To reduce the headache the size needle makes a bit of a difference, smaller the better, but it takes longer to drain the fluid, but it reduces the chance of fluid leakage leading to awful spinal headache.  For most people the LP is really no big deal, and I've had numbing medication each time prior to the LP.  With the LP they will look for markers of inflammation, oligoclonal bands (sign of MS or TM).  Good luck and keep us posted.

Karin

[allium]

Hello, all.  Thanks for your replies.

I told the Dr. was not comfortable having this done in his office, resulting in him referring me to the local big deal hospital.  It will be done with x-ray (fluoroscope) guided imagery, but done by a PA.  I asked for a different day, and was told they can not do any at all the week after, because they have a staff shortage.  They have a staff shortage because they fired about a third of their staff to save money.  That's healthcare in Rochester.

He was comforting, though.  I was told if it got to the point that I cannot walk anymore, I should come right in and they will put me on high dose steroids.  My arm is somewhat disfunctional today.  Not sure if that counts. 

I appreciate you telling of your experiences, and took it to heart that this isn't something to be done in an office without at least a numbing agent.  To be sure, it should have been done a while before, but between either being crazy or having a dread disease, I haven't had my courage up to tell them I should have one.

Karin/Hoping, did you have facial numbness, too?  Did yours come on gradually, or suddenly increase?  Dr. thinks a LP will be more diagnostic than a back MRI.  The cervical one I had in Oct. did not show any lesions at that point.

Hope I can hold on until Friday; my lower right back and side are very painful.  Kidney, maybe (blood tests last week showed nothing).

ty for your support.
Sheila 

[ktfabian]

Sheila,

I'm SO glad you decided not to have the LP in a doctor's office!  Did he mention that after the procedure, you have to lay flat on your back for a number of hours (it was 4 the last time I had one, I've had at least 6).  It should always be done under floroscope and I would want the back up of a regular hospital on the very, very small chance that something went wrong.  I never had any anesthesia, just a bit of numbing on the skin where the needle goes in and I can't say I've ever had one that was terribly painful.  It's more pressure than pain. 

The reason I was told to lay still was to avoid spinal fluid from leaking through the tiny hole that is made, causing a spinal headache.  These can be downright awful and sometime involve having a small amount of  your own blood inserted through the same whole that was made during the puncture to form a patch. 

I've had a couple of these and only the first one I ever had done was worse than the headache, mostly because the tow idiot doctors who did the patch (this was 16 years ago) did it in my hospital room with me sitting over the side of the bed while one drew blood from my arm, transferred it to the other and he injected it in my spine.  When I've told other doctors about this procedure they get quite upset.

The last LP I had was almost 2 years ago and the only reason it was a bad experience was because I had a migraine, was vomiting every time I moved, and they were doing the test to look for meningitis, so I was scared to death.  The test itself took under 5 minutes  and was not that painful at all.


Good luck to you, Tracy

[hoping]

Originally no facial numbness, but as I go downhill again, I am experiencing facial numbness, slowly progressing, but can't get into see my neurologist.  My weakness comes on gradually usually, within a week or two, spreading from arm into legs.  But sometimes it can hit out of the blue with new aggressive burning pain and I am rendered unable to walk period.  I do very well on high dose Prednisone, but now every doctor is insistent I go off all Prednisone, down to 10mg a day now and will only deteriorate more.  Seeing rheumy Thur. and will try to convince him this IS SJS and treating it aggressively will stave off my neuro symptoms.  I deal with pain (incredible burning) and numbness and weakness every day and use a walker.  Used to be a PT.  I probably need another LP.  My MRIs are always clean.

Hugs to you,
Karin

[lisagnc]

Sheila,
My problems started out sounding like yours.  Then I tripped and I could not move my right foot.  After seeing a bunch of bad drs I ended up at Hopkins.  I think my final diagnosis was vasculitis (not the skin one though) and/or mononeuritis mutliplex.  It has been a rough year for me.  Have you had an emg/ncv?  IMO you should be seeing a rheumy and/or neurologist.  I have both treating me now.  My symptoms came on slowly over several months.  Then it went downhill quick.  I ended up in a wheelchair for several months.  I am at the one year mark now, and I am still not fully back on my feet.  I travel 5 hours to Hopkins.  Looking back I wish I had been encouraged to more agressively look for answers.  It costs a lot for me to dr to the dr, but because of this I spent 12 days in the hospital and a lot of money wasted on physical therapy and drugs that did not address the real problem.
Lisa

[allium]

Tracy and Karin, hello and thanks for your replies.  I'm going in today to the hospital, and am told they DON'T have people lie flat for very long at all afterward.  Elevate their head, and dump them out the door.  Outpatient bed time is money wasted for a hospital, you know. 

I hope I am doing the right thing.  The choices offered to me so far have been terrible.

I plan on laying down in my car, then right to bed at home, but I have to get up and move for each of those trips.  I bought a gel type neck pillow, which seems pretty comfortable and supportive (I have rather bad neck osteoarthritis and herniated discs).  And, I have some audio books to listen to for my bed time.

Lisa, thank you for sharing your experiences.  I remember last year when you posted about going to Hopkins, but that thread is gone.  I hope that I can get on track with some doctor locally, but I might have to go somewhere else myself.


Sheila

[Bucky]

Alli,

Been thinking of you today.  Hope your procedure today went well. 

Take care,

Bucky

[allium]

Well I'm back home.

Feeling a bit in pain in my back, neck, and nauseous, but otherwise things went ok.  The hospital staff was very professional, as well as the PA being quite experienced.  A big relief for that.  I wish the rest of the medical staff that are supposed to be helping me were as interested and attentive.

I had some liquid versed and morphine, as I told them about my other pain.  The whole procedure did not take too long, and only hurt with the numbing agent and the withdrawl of the spinal needle (quick).  I stayed a while, because my BP was jumping up there.  Ah, those caffeine gel shots...too much of a good thing.

Thank my luck for having a Rx for hydrocodone and anti nausea stuff on hand (still queasy).  Hope to get to sleep; so tired but still buzzed up!

Appreciate your good thoughts. got me through it.  Now to wait.
Sheila

[dbab]

Sheila,

I'm relieved to know that you are home now and ok.  I'm glad that it went better than expected and I'm sure you are just happy its all over.  Take care of yourself and take it easy.  Good thoughts to your way!

[Scottietottie]

Hi Sheila 

I'm glad the whole procedure wasn't too traumatic. Hope by the time you read this you are well rested and everything has settled down.

I hope you get the results in the not too distant future. Waiting for results can be a real drag.

Keep us posted.

Take care - Scottie