Possible MS

[cdvzfr]

I have been having weird problems since October 2005. Started with double vision and visual disturbances in right eye. Lasted for 2 weeks.  Had blood work for all kinds of diseases and nothing came back postitive.  Then had an MRI done which showed a small lesion on my optic nerve of my left eye.  Saw a nero. and he determined that he thought it may be the start of MS, treated me for stress and aniety.  I had nothing really happen in 2006. So, I thought it must just be it was stress.  Thank God!  But, then in March of 2007 I had bladder problems and problems with my left eye.  My left eye froze up and hurt when I moved it, really bad pain in the back of my eye.  Lasted about 1 week. Drove me crazy but I thought it was Allergys or sinus infection.  Didn't call doctor.  Then in July 2007 same thing happened again. ( I thought ok what the hell is going on?) I had a appointment with my nerologist coming up at the end of the month so I will just let him know all this.  My appointment ended up having to be changed to August.  Went had another MRI. Still waiting the results.  Appointment tomorrow.  Since MRI, I have had Numbness in my right toe and ache in Right leg. Lasted 3 days then it moved to right pinky and right arm.  Also lasted 3 days.  That all went away except for the shaking in my right hand and burning, achey feeling I get through out my arms and legs.  A little pain and burning in back.  Twiching in eyes and my arms are feel heavy like I just worked out.
I am starting to get fed up with the can't find anything besides the 1 lesion so pretend like we never told you anything and go on with life. But, we need to see you again in December to be sure it's not MS?
Has anyone gone through this? Does anyone have any suggestions for me?  I am going to request that I get a MRI of my spine? Should I?
Please send me comments.

[cdvzfr]

I hope this isn't a stupid question.  If you had an MRI w/ contrast done during an attack and after, with new lesions or any changes in the old one, was it an MS attack?  

I was sent to the ER by my neuro because my pain in my arm was so strong that (2) 500 mg of Hydrocodone (Loratab) wasn't helping.  I was there for 5 days.  I had typical MS symptoms, burning feeling flowing from my head down my body, tingleing, double vision,  numbness in face and lip, no balance, and even the loss of my left leg for two days.  All blood work and MRI's of the whole body  and LP came back normal.  I was sent home with lots of medicine; Neurontin  (100 mg 3 x day), Naprosyn (500mg 1 x day), Phenergan (25mg 1 ev.6h), Ambien (10 mg ea. night)

Had severe headach from LP that lasted for 5 days. I wasn't sure if it was from LP or something else.  Until I had this really bad echo start on the 5 day along with ringing in my ears and this woshing sound.  I was dizzy and vomiting, felt like I was dieing.  My Husband took me backk to the ER. They did a CAT SCAN which showed my membrains were inflammed and I had extra spinal fluid in brain.  I was treated with100 units of Acthar Gel and 2 bags of Solu-Medrol.  Another Mri of brain was done with contrast (1.5 Tesla) and nothing changed.

I have to still take the Neurontin for the rest of my life. I had to stop my daycare service to try to lighten up stress.  

Do you think it was MS? I am wondering if it was an my first major attack and that down the road the proof will show up.  The doctors all say no MS 100% confident.  If not MS then what was that?

[Quixotic1]

Can I call you Hubby?  I feel so bad for her.  What an ordeal to go through!  I am pleased that the testing is looking very negative for MS.  I wouldn't wish this on anyone.  I really coldn't be able to tell what is causing her symptoms.  MS sounded quite likely, but they need to test her (and may have already) for all the great mimics of MS.  Her episode sounded almost like a stroke so they need to test her for "sticky blood" which can look like mini strokes.  It's called Hughes Syndrome and they need to run:

Anti-phospholipid antibodies
Anti-cardiolipin antibodies
Lupus anticoagulant and check for all the clotting factors.

She needs to be tested for Lyme disease using the Western Blot method and sent to a reliable lab skilled in testing for tick-borne illnesses.

Did she get an MRI of her spine?

The meds you listed are for nerve pain, regular pain, nausea and the zolpidem (Ambien) is for sleep.  They are symptomatic treatment only.  

The cigarette smoke can make several conditions worse.  It causes constriction of the arteries, so any tissue that is already deprived of blood might be worse.  (Hint - is they make her feel worse - then it is imperative that she not smoke.  As awful as it is, this becomes the best time for her to stop.)  The cigarette smoking also causes an increase in carbon monoxide throughout the body.  This could intensify headache which could increase her other pain.

Thank you for posting for her.  Keep us informed and I'll add any thoughts I get when we hear her results.  The Optic Neuritis really places her at high risk for MS, even if the MRI is negative in the beginning so, I'm still worried, but I am NOT a neurologist.

Quix

[cdvzfr]

My wife is Rae,she isnt feeling too good right now so I am sitting in front of her computer.It is wonderful to have her home after 5 days in the hospital.Her neuro said he is 99.9% sure she does not have MS,so what is it that is making her feel this way?Her symptoms intensify after she smokes a cigerette.She also has quite a capsule coctail now,consisting of Gabapentin,Promethazine,and Naproxen,with a Zolpidem chaser at night to sleep.It kills me to see her in pain,are these meds going to help control something we dont even know what it is?

[cdvzfr]

WENT TO ER ON SAT, ADDMITTED.  TESTED UNDER THE SUN DONW. ALL NORMAL. jUST FINAALY GOT TO GO HOME ON WEDNESDAY. NOT REALLY FEELING GREAT. LP CAUSE SEVERE HEAD ACHE. LOST FEELINGS IN LEFTS SIDE. COULD WALK WITHOUT SLIDING MY FOOT. LASTED A DAY. NOW JUST ALITTLE WEAK ALL OVER. MAJOR NUMBNESS IN HEAD TEETH. CANT TYOE THAT GOOD. TALK LATER.
RAE

[Quixotic1]

When you're undiagnosed and having severe symptoms it isn't a bad idea to go to the ER and have the episode documented.  It is important that you not appear to "super anxious" becasue some ER docs are a little (lot) jaded and will dismiss all problems as due to anxiety.  But, new really severe pain needs to be seen.  I would recommend an evaluation.  I hope you live on the West Coast because you're already in the Saturday Night Rush back east.  I cannot tell you it isn't cardiac, but I would gather it is related to the rest of the crud you've been going through.

The morning should be lighter in the ER, but if you have a tremor a doctor should see it and document it.  Tell the ER that your doc is suspecting MS, that you have developed what he thinks is L'Hermitte's sign and that you are waiting on an MRI of the spine.  (pronounced Lair-Meets sign).  You should get something for the pain.

Your husband doesn't want to believe anything is really wrong.  It's denial and normal.

You asked before if the MRI lesion on the Optic Nerve is the Optic Neuritis.  Yes.  It's the actual image of the inflammation of the optic nerve that caused your symptoms.  If you go to the ER make sure the doc knows about the ON also.

Let us know what happens.  Quix

[cdvzfr]

Also some tingleing, numbness in my leftside lip and cheek bone.
I have the shakes really bad. In my right arm.

[cdvzfr]

I am having really, really bad pain in my left arm. In the middle. I have been having it all morning. Left arm feels weak and every now and then it burns from elbow to my fingers. also some tingleling in fingers. I am alittle scared. What can I take? What should I do if it continues?
I was afraid it was heart problem but, my right arm is sore in the same spot. Not as bad as on the left.
I have been trying to tell my husband that I am concerned and he just keeps saying we are middle aged, suchs to getting old. Take something.
Can anyone help?
Rae

[Quixotic1]

The Signa 1.5T is an older MRI with a 1.5 Tesla magnet, so it won't show quite as many lesions/scars as the 3T.  A lot of doctors claim there is no difference, but back-to-back studies show the 3T to pick up as many as 25% more lesions.  In the spine it is especially useful.  My insurance wouldn't pick up all the cost of using the newer machine, so I had to pay 10%.  

The word lesion just means "something wrong."  It's a very non-specific word.  For instance a "lesion" on the skin could be a scratch, an ulcer, a wart, a cyst, a tumor, "anything wrong."  On the MRI it is an area that does not apprear to be normal brain tissue, usually it indicates a scar.

A cyst is a fluid-filled sac.  These can be of hundreds of different types.  On the ovary they are usually cysts that contained an egg, but didn't rupture at ovulation and just kept growing.  A cyst in the brain tissue is a blank area where the brain tissue is missing and it is filled with cerebrospinal fluid.  

Yes, the leaking with pressure is stress incontinence and probably is related to your large babies.  Have you talked to the kids about being so big and all the trouble they caused, lol?  The other problem that you mentioned first sounds neurological.

MS does not "run in families."  When a parent has the disease, there is an slightly increased risk of developing it (risk rises from 0.15% to about 4%).  Most people with MS do NOT have a family member with it.  Yes, use us to express your worries and fears.  We'll bring your family in when there is (if there is) more to tell.

I bumped up my discussion of "MRIs, Lesions, and Symptoms."  You might get some of your questions answered there.

We're here.  Quix

[cdvzfr]

Thank you so much to everyone for helping me with this. When I read your responses I don't feel like I am going crazy. Thanks!

If I have a lesion on my optic nerve does that mean it is Optical Neuritis? My doctor really never gave me a clear dx of that.

I think my nero is starting to finally hear me because I started making a list of everything and all questions and I hand them to him now.  Before I couldn't really remember everything, or thought it wasn't important to tell him about.  I was always so nervous and I am alittle shy so I just felt like I should except his way.  

He did a partial exam and pretty much stopped when he got to the pain in my back.  He said we need to have an MRI of the spine done. See you after that.

I am not sure if it is with contrast or not.??  Or if it is of the cervical or thoracic part of the spine.  I do know he did not order a LP as of yet.  As for the 3T machine, how do I tell what kind of machine it was for my brain? I am going back to the same place. I looked I my MRI scans and can not see any 3T or anything but Axial - Flair. Or is it Signa 1.5 T?

Are lesions and cysts the same? i have had numberous cysts on my ovaries and cervix. I actually had to have 1 removed because it was the size of a grapefruit.The bladder problems I have had are full bladder feeling and nothing hardly comes out sometimes. Not sure how long it lasted. Also I have had problems where I will leak if a cough or laugh really hard but, I think that is because I have had 7.5 LB twins and one 10.5 lb singleton.  I had constipation and then the runs, but in July I had my gallbladder removed so that has changed.

Anyways, I am worried that I am going to go to this and they will find nothing again.  My family are supportive but, I think they think that the problems I have are just normal getting older aches and pains.  Could it be that? I mean, could it be that the feeling I feel in my back is just from not srechting enough?  Or sleeping wrong? My family just thinks it doesn't run in the family so, I cna't have it. I've tried to tell them it doesn't have to run in the family. I think they are worried and they are trying to help me  not worry about it.  That's all I hear, stop worrying so much, relax, you are to uptight you need to calm down. I have started to hold in things from my husband and my family because of the comments.  So I just tell them I feel fine today.

I am so glad I can talk with you guys hear.  Thanks, for the info. and the support. I will let you know when my appointments are going to be.

Thanks again,
Rae

[Quixotic1]

A belated welcome to the forum.  You are safely now among the Undiagnosed, the Misdiagnosed, and the Diagnosed, but Pissed Off.  Before I say anything more I want you to know that NO ONE should ever be made to feel like symptoms are all in their head because they are at higher risk of having a serious illness, so they come in with serious worries and symptoms!!   I recommend you change family doctors.  I try to give everyone who comes on the board with a complicated problem or anyone who has been belittled becasue of what they are going through.  I talk in the context of diagnosing MS, but can't really diagnose anything from here.  I am a physician, but not a neurologist.

Your bout of Optic Neuritis placed you at high risk for the develoment of MS.  With ON and nothing else, you have about a 33% chance of developing full blown MS within 2 and 1/2 years (and a 42% chance with 8 years).  So you're not supposed to be anxious when you develop weird things?  Who's being unreasonable?  The lesion on MRI was on the optic nerve, so that is confirmation of the ON, but it doesn't count as a separate lesion from the ON.  (It IS the ON)  Does that make sense?

Your neuro seems to be paying attention to you.  This is great!  The sensation of electric shock down your back when you bend your head down is THE classic description of L'Hermitte's sign as Lynn said.  This is felt to be from the presence of a lesion within the cervical cord, either from direct strecth of damaged nerves or from pressure from the lesion on nearby nerves.  Either way it is highly classic for MS, but does not in itself make the diagnosis of it.  Other things can also cause it less commonly.  So, an MRI of the cervical and thoriacic spine with and without contrast is the next step.  Are you getting both?.  I have L'Hermitte's and it shows up with electrical buzzing in my left thigh.  This is atypical, what you describe is right out of the textbook.

In March you began having bladder problems.  How lon did that last and what kind of problems were they?  

Seems like your problems are appearing and only staying around for 3 days or so.  Is anything appearing to be lingering?  It sounds like you've been in a developing relapse.  They can come on this way - if this is MS.

As for dropping the bomb that they need to watch you for MS, relax and see me in 6 months.  That's hard, but with ON and nothing else, there was little they could do except the spine MRI and an LP.  So it looks like these are the next things you'll be looking at.  Something the neuro might want to do is called a SomatoSensory Evoked Potential to see if any of the things going on in your arms and legs can be traced to the Central Nervous System.  Those sensations of tingling, burning, aching, can be from the peripheral nerves out in the body or from the CNS in the spinal cord or brain.  I doubt they need to do an VEP (Visaul Evoked Potential) because they can see the lesion on the optic nerve and I wouldn't think a VEP would give them any new info.

A whole lot of people here on this forum have faced or are facing your exact situation + or - a symptoms or a lesion here or there.  Now it's a matter of getting enough data to dtermine if the probability is high enough to warrant beginning MS meds.  Until they find another lesion on MRI, I doubt that they will do this.  Did the neuro today do a thorough neuro exam?  Becasue the presence of abnormal physical exam findings, objective ones that the examiner can see, is one way to determine the presence of a lesion.  For instance, if you have hyper active reflexes then that shows a defect in a specific tract in the spinal cord and would be a different lesion than the one seen on your optic nerve.  It's things like this that add up little by little to a diagnosis.

In the meantime, you are a bundle of nerves.  Do you really think that your family is doubting you?  Or do you just feel that all of these problems should have shown something more by now?  If it is the second, then I'll tell you that most good MS neuro's still believe that a large number of MS lesions that a person has remain "invisible" (too small for the resolution of the MRI machine).  This problem leaves a lot of people in the limboland of feeling really crummy and feeling their body "fall apart", but no clear diagnosis.  We specialize in them.  The majority walk fairly easily into their diagnosis.

As we go on we'll help you with information to give to your family to explain what's going on.  Please make sure that the MRI of the spine includes the cervical and thoracic spine AND that the images will be done with and without contrast.  This will maximize what they can find.  The spine is difficult to image with the MRI (at least relative to the brain).  Doing the imaging on a newer, higher powered MRI machine (currently the 3 Tesla machine) might make the difference between finding lesions and not.  It did this spring with me.  I went from ZERO lesions on the older machine, immediately to 6 lesions on the 3T machine.  Perhaps you could make this request of your neurologist.

They also need to send blood work to rule out the mimics of MS.

You are not crazy, but you need to be less tolerant of weird and scarey things that happen, like eye pain and blurry vision.  Your doctor (neuro) needs to hear when something major happens.  If you are concerned about being a wussy, then bounce it off us here.  We're here for you.

I hope this helps, Quix

[T-lynn]

I'm glad your neuro didn't dismiss you.
A spinal MRI will definately benifit you and neuro and is standard protocol for the diagnosis process.
The shooting pains that you descibed is called L'hermittes,its commonly associated with MS and pinched nerves in the neck.
Your not crazy,your symptoms are real,many DRs like to dismiss symptoms as anxiety.

keep us posted

[cdvzfr]

Appointment went ok. My MRI of my brain from the other day showed only the one lesion with no changes.  He requested that I get an MRI of my spine.  I am having numbness in my back by my left shoulder blade and when I bend my head down towards my chest or bend over I have a shooting pain go down my spine. Hopefully I will get some answers from that. Or if anyone of you have heard of what could cause this.
Thanks for the support, I really need to hear that people don't think I am crazy and that it's aniety.
Rae    

[fishyfish]

Good luck with your appointment.  With the one lesion showing up on your MRI, at least you have some clinical presentation to start with.  It's hard to get anywhere with the doctors when all you have are sensory issues.  Keep your head up and check in here lots.  It sure has helped me when I'm feeling bewildered.

Fishyfish

[sllowe]

Hi Rae (boy that's easier than c d v z f r),

Welcome to the forum. . . .   I hope your visit went well today.
Let us know how you made out.

SL

[cdvzfr]

Thank you for your response. I felt so stupid yesterday because I went to my family doctor to get my blood pressure and cirrculation tested. My family was really neverous and I couldn't get into to my neuroligist until Thursday.  He made me fell like he thought the newest symtoms were all in my head.  I feel like my husband and my family are going to start thinking that way too.
You are right. I should wait until tomorrow. Thanks again.
Rae

[grannyhotwheels]

I agree with Kristin.  It's all about the process of elimination.  I know it's a pain in the back side but that's the sad facts.  

Your neuro may look at your MRI tomorrow and say MS right now but I doubt it.  Hang in there and be sure to let us know what happens.

I'll be praying,
Carol

[floridamom2]

The Optic Neuritis with the lesion sure sounds suggestive of MS along with all the other symptoms.  I would wait to see what the doctor suggests tomorrow but according to National MS Society website a Lumbar Puncture along with Evoked potentials and the MRI of C & T Spine with and without contrast may be needed to help figure this all out.  Remember that MS is kind of a last resort dx - everything else needs to be ruled out first before most doctors will say it.  Sometimes that leaves alot of us in LimboLand for a while - hopefully you will not be one of us here but will get answers soon!

Good luck tomorrow and let us know how it goes!

Take care!
Kristin