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1172359 tn?1310671293
Spinal Tap Phobia
I saw my MS Specialist yesterday and he has ordered yet another test.  A spinal Tap.  I am scared of those.

I understand and appreciate that he wants to me make sure it is MS before he starts treating me, but what else could it be?  What else mimics MS?
Because my EMG was normal and the visual part was normal I believe he is starting to doubt me.  I wouldn't make up these symptoms.  I do not want them.  They are ruining my life.  
I apologize because I frustrated and confused.
What if there are no antibodies in the fluid, does that mean I am crazy and none of these symptoms are real?
Does the lesion on my brain mean something else?

Sorry guys, I do not know what to think anymore.

Cin
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Page 4 of 4
1040373 tn?1273691088
I'm sorry that man felt the need to try to scare you. What he did is just horrible. He should be setting an example for others with MS, not making them cry!

Please don't take any stock in what he had to say. My life hasn't changed that drastically since being diagnosed. Don't let him scare you. There are plenty of us here who can be honest and realistic with you and you don't need people like him around making you upset.
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1172359 tn?1310671293
Thanks for your replies.  Yes that man did not give me the warm and fuzzy feeling I think he was trying to accomplish.  He sent me an e-mail and told me I ever need anything or wanted to talk to please let him know.  Hmmm, I am all good!

It was suggested to me to google "mimics MS".  Well I have done that until I think I have read every page on the internet.
There are many and I have looked at them all, but none are my symproms.
Here is my fear, what if my Spinal Tap comes back negative?  I am not sure how I will feel.  I am not say I want this to be MS, but what I do want is an answer and to feel better.  I told my specialist my good days are getting few and far between.

Ok, I have two questions and then I shut up...
1.  Does anyone have a burning sensation in their finger tips on the side of the body that is effected?  It feels like I have burned my fingers.
2.  Can this effect your memory or like when I am talking to someone I lose the words that I am trying to say.  My husband is so patient with me when we are talking because I struggle sometimes with a simple conversation.


Ok I am done...for now!
Thank you so much for being here.  I do not feel alone anymore!!

Cin
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1185571 tn?1264827135
I don't have burning in my fingertips but my feet burn. As for losing words...what did you...uhm sorry it's gone. lol Yeah I get that ALL THE TIME!  I'm 37 now but when I was 10 years old I tested reading and comprehending 1000 WPM. Now I'm lucky if I can make it through a conversation without stumbling with my vocabulary. My poor husband has to finish my thoughts for me. I make so many mistakes when I type if it wasn't for spell check you couldn't read this comment. lol

Best wishes, Mary
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1172359 tn?1310671293
Your so funny, that is exactly what I do and my husband finishes my sentences as well.

I guess I should tell the Specialist about my fingertips and my inablility to carry on a conversation.

Thank you for your reply.
I feel so much better everytime I get one knowing that I am not alone.

Cindy
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1056589 tn?1273750702
Hi cin68,
I had my first LP on Jan 13th. I had been putting off as long as I possibly could because I was scared of it.I had heard so many horror stories. But It is the last step for me in getting a diagnosis.
I can honestly tell you that it was not at all as bad as I had expected. I did have mine done in the hospital under Floroscope. I really recommend having it done that way. It is a Xray that enables the radiologist to see exactly where the needle needs to go.That way it is just one poke and your done. I did not actually get a true spinal head but I did have some pressure. So my neuro told me to just relax and lay down as much as possible for a few days. But I unfortunatly got the flu immediatly after the proceedure. I had not been feelin that hot a few days prior to it and ended up with the flu..Lucky me. If it would not have been for the flu the LP would have been a breeze.

I have burning on my face,mouth,tongue/neck and shoulders.But it is mostly confined to my right side.I also have cognitive issues.I have brain lesions and a plethora of MS like symptoms.
Please Take Care, Theresa
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1172359 tn?1310671293
My specialist never mentioned anything about a Floroscope.  I will be at the hospital because I go to Emory in Atlanta.  He said he is going to do it in one of the examining rooms.
Ok now I am freaking out, maybe I should give him a call.

By Friday I am going to be a loon worrying about this.  Thank goodness for Klonapin!

Cindy
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1056589 tn?1273750702
My neuro is an MS specialists and she and the other neuros in the practice do not do them at all in the office.She said doing it with the Floroscope is just easier for everyone involved.It was actually kind of cool because I could see the needle in my spine....Sorry I'm weird I guess..lol
I know alot of folks that have had it done in the doctors office and had no problems...
But it might not hurt to call your neuro and ask about it. Sometimes insurance will not cover it.But mine did.
Take Care, Theresa
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Mine was done in the MS center in an "operating room" type setting. It only took a few minutes and  didn't hurt much. A little poke.

I can totally relate to the forgetfulness. I can be saying something and have to stop and go.."what was I saying?"  My neuro asked me before diagnosos whether I had trouble remembering things.. I told him I felt like I was getting "dumber"..(which isn't even proper english..lol) I can't think of words.. Everything is called a "thingy"..thank goodness my kids can understand what it is I am talking about. Its like playing charades..

When I would get mad, I used to be able to talk really fast, like an auctioneer..my husband used to call it a "drive-by verbal attack". Now,my tongue gets tied up. Bad for my defense..lol

I remember actually being happy when I was dx..Then, reality set in. There are lots of emotions to go thru. I hope you get the answers you are looking for.
Take Care!!  Kristi
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1172359 tn?1310671293
Hey Ladies!
I guess I need to call my insurance company too.

That is so funny about you calling everything a thingy, that is what I call everything.

I will be in the middle of a conversation and completely forget what I was talking about.  Before all this MS stuff, the girls in the department would giggle at me, not being mean, but would say "hey look something shiny"
Now they don't do it so much, because now they know what is going on.  I kind of miss it.  I do not want to be treated with kid gloves.

I am an emotional rollercoaster, giggling one minute and then crying at the drop of a hat.
So lovely to be around.

I hope you guys have a wonderful day and thank you!


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1140169 tn?1370188676
I had a LP in Dec and I'd have no problem doing it again if my neuro wanted me to.

I don't have the burning sensation you get, at least not as severely as you.

Cog fog I get. I have memory problems, can't find words, forget my point....etc, etc. My wife often completes my sentences for me. I just look at her when I lose a word, she says the word, and i carry on talking like i said it. We get a chuckle out of it, you gotta keep a sense of humor.

This is my 3rd try to respond here, i don't know what I'm doing wrong, but I keep loosing my posts.  I'm being real careful this time

Mike




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1172359 tn?1310671293
Yeah my husband patiently stands there while I try to complete a sentence.  We have been married long enough that he knows what I am about to say or close to it anyway.

I hope it does not get worse, I work for an airline doing maintenance records and there is so much to remember and keep up with.  

Take Care,
Cindy
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1185571 tn?1264827135
I dread the lumbar puncture "thingy" too. I had one in the hospital about 7 years ago and it was not a pleasant experience. They did it like 3 times and I could've come off the table like the exorcist on them. Little did I know that Dr. had the worst rep in the area. lol As long as they know what they're doing I am sure it will be fine. The test and the way it's administered from what I understand has come a long way. If I could do mine beside of you, we could go it together. Just think, this could be the day your mystery ends! Isn't it worth a little discomfort to finally prove to them what you've suspected? It will be for me! You'll do fine and so will I.
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1172359 tn?1310671293
I am ready for the LP thingy and ready to get some answers.  I am almost afraid of the answer.  What if it is negative, is this crap all in my head?  Well literally it is with  the lesion and all.  

Ok, come to Georgia and go with me.


Cin
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572651 tn?1333939396
Cin,
Please try to relax about this - it really does sound much worse than it is for the majority of people.  My neuro did my LP in the office, in an exam room with no equipment like a fluoroscope.  

He was great - I wrote about the whole procedure in my journal if you are interested in hearing about it step-by-step....

http://www.medhelp.org/user_journals/show/42150?personal_page_id=865800


The cog fog is quite common - but one thing I believe all of us would agree on is it gets worse when we have performance anxiety.  The more we push and worry about retrieving words, the worse the problem becomes.  

Stay in touch and let us know how the testing goes.  It sounds like you are in good hands.

be well,
Lulu
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1172359 tn?1310671293
I really think I am ready for this.  If it was not for this forum I think I would have a breakdown.  You guys are amazing and I truly appreciate all the advice and the laughs.
I am ready to face this, whatever the results.  If it is negative then I will demand more test.  I am not crazy and I know what I feel.

You are correct about the cog fog, the more I try to get my words out, the more frustrated I get and then I sound like I am speaking in a different language or daffy duck,
Anyway, thank you everyone.  I will let you guys know how things go and then the results.

Hugs to all!!!
Cindy
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1172359 tn?1310671293
I think I have everybody!
I just want to say thank you again for your post and notes.
For the first time in awhile I actually smiled all day and laughed, well except when I fell over last night trying to put an outfit on my dog.  (yes I dress my dog).  She gets cold.
I busted my head on the corner of my kitchen table, but my sweet Sadie girl looks so darn cute in her new outfit.
You guys have made me feel so much better.  Better than Mr. Positive here at my work.

Anyway, thank you for the support.  You guys are amazing!

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1172359 tn?1310671293
Ok I had my LP today at 1:45 and it is now 11:16 and my back hurts so bad I want to cry.  I have not had a headache at all.
I have taken two loratabs and nothing is stopping the pain.  I am going to bed now to see if it helps.
Is this normal?
I have a photo shoot tomorrow and I do not think I will be able handle taking pictures.

Just wanted to ask if this has happened to anyone ele.

Cin
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I am so sorry to hear that you are having pain. I didn't have a problem with my back, just headache. Try to get some rest and take in plenty of fluids and caffeine tomorrow. Maybe a call to an on-call nurse or Dr to see if there is something more they can do for the pain. Is there any way to reschedule the photo shoot?

My thoughts and prayers are with you tonight.

Be well
Kristi
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572651 tn?1333939396
Hi Cin - you should probably reschedule your photo shoot - It sounds like you need to stay quiet  for a while.  If the back pain continues be sure to call your doctor's answering service and ask to speak to whoever is on call this weekend.  

I hope when you wake up Saturday morning, the pain is all gone.  But please take it easy so you don't aggravate the back.

feel better,
Lulu
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1140169 tn?1370188676
Put a cold pack in the small of your back, lay back with 2 pillows under your head, drink plenty of your favourite caffienated drink (coffee, coke) and tune in to some easy listening '70s tunes.

If it becomes unbearable phone for help. Do you have someone there who can help you?

Don't worry about tomorrow, it'll look after itself.

Be well        Mike
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1172359 tn?1310671293
Hello guys,
The back is not as bad as last night, but oh god the headache.
I went back to bed with a big cup of coffee, my sweet dog who will not leave my side and I rescheduled the photo shoot.  They are pregnancy photos, she has a few more weeks to go, so I will do it next weekend.  She has had a spinal tap and completely understands.
Ok I am laying back down to some easy listening 70's music (great idea MIke).
Love my 70's music.

Take care my friends,
Cindy
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667078 tn?1316004535
My back was really bad the first night, not so bad the next, then o.k. after that. The headache lasted a week slowly getting better.I would sit up awhile a few days out then have to lay down. It does get better. If not do not hesitate to call the doctor.

More people have the headache than doctors let you know. They do not want to scare you to death before hand.

Alex
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1172359 tn?1310671293
Good morning to everyone!
Please tell me this headache will go away.

I need to express my feelings regarding my results from the LP.  I cannot think of a better place to do it but here where you will understand.

I am scared and I cannot decide if I am scared that it will come back positive or negative.
If it is negative, then what is wrong with me?  My specialist said that if it came back negative he would just send me back for more MRI's of my brain and monitor them.  Which means no treatment and I have to walk around with no feeling on my left side and now the right side is starting the same path.
If it is positive, then I have to accept and deal with my life ahead of me, but atleast I will have an answer.
Am I making sense?
Friday, the day of my LP was my birthday and it was the worse weekend/birthday I have ever had.

Quick question and then I will shut up, I have been shaking (hands and legs) all weekend.  Is that normal?
Cin
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1059772 tn?1286658790
So sorry you are going through these tests and all the emotions that they stir up. This is such a crappy feeling which I understand all too well...

I had my first MRI on my birthday two days after my my first neurologist appointment in September.  It was abnormal and pointed to MS.  My spinal tap came out negative.

It's hard to puzzle out the conflicted feelings generated by the diagnostic procedure.

A clear answer means a positive result and the diagnosis is made.  A negative result is inconclusive and starts the journey into limbo land.  A friend of mine asked me: "you don't want to have MS do you?"  I wanted to scream at her but held back and answered "of course not."  I just want an end to ambiguity whatever it that means.
It's hard to wrap your mind around it all.  Once you get on this train it seems like you can't get off.

At this point in time awaiting my follow up MRI, I am just trying to give myself some slack.  I am not one to accept disarray in my life. So I am working to accept these confusing emotions.  It requires a certain kind of patience that I don't seem to have much of.  I am doing little things to improve my health. It gives me a tiny sense of control. It can't hurt to work on diet and do exercises to increase flexibility MS dx or not.

I hope you get the answers you need and that you find good support in your life to help deal with the process.  

As for your question about shaking hands and legs... I don't know what's normal anymore.  In my own experience the stress of the last few months led to all sorts of oddities of sensation and  twitches.  Also so many things I have always just ignored over the years have turned out to be symptoms of MS.  Now I am hyper aware of them.  

I suggest that you keep track of your symptoms (I am using the tracker available on this site) and mention them to your neurologist at your next appointment.  Unless of course something occurs which you think would merit a phone call.

About the headache, I hope your doc gave you instructions on when to call or where to go if it seems like you need the blood patch.


Take care.

skye
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667078 tn?1316004535
It is normal to fear the results. Either you went through the test it came out negative and you are back at square one or it is positive and other tests have to be performed to rule out other illnesses and then a possible diagnosis of MS. The diagnosis is mixed first it is good because you know what is wrong. It was bad in my case because MS is crippling and incurable and in my case little can be done. A lot more watching and waiting to see what happens next has happened since my diagnosis almost a year ago.

Alex
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1040373 tn?1273691088
I know, the emotions are very confusing! I cried when the doctor first mentioned MS. But after the initial shock wore off, part of me was almost excited to have a name for what was going on.

I'm sorry you have a headache! I had a mild one for about 5 days or so. It didn't interfere with my daily activities though.

Happy Birthday! I'm sorry you had to spend it this way.
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Thank you for sharing your frustrations! My last lumbar puncture was negative, but I have lesions on my brain, numbness and tingling in my legs and bilateral arm pain with LOTS of fatigue and confusion. I get the results of my brain MRI tomorrow , so we can all share our most recent tests results.  I just want a definitive diagnosis so I know how to prepare my body for the fight (whatever that fight may be :)

Rachel
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1172359 tn?1310671293
As soon as I get my results I will share them with yuou guys.  You do the same Rachel.
All I want is an answer.  I am starting to doubt myself and I do not like that.

I keep reading up on MS and I see that most people have attacks and then have good days and that sometimes they can go for a long time without a symptom.  I rarely go a day without being numb and every night my legs and my left arm is fatigued.
I just do not understand.  What happened to my good days?

You guys take care and thank you!!!
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1172359 tn?1310671293
Hello everyone, I am still waiting for the results from my LP, but no matter what it is, I know something is wrong.
I believe I have mentioned that I passed the evoked test, and I am not sure if this has anything to do with what happened today, but I had a horrible sharp pain in my left eye.  It has been blurry all day, but when that happened it scared me bad.
Now, my eye is sore like somebody poked me in it.  
Is this normal? what in the world is happening to me?  If I passed the evoked test on my eyes then why is this happening?
More questions, sorry everybody.
Cindy
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1172359 tn?1310671293
Still no test results from the spinal tap!  Are they trying to make me crazy?

Cin
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198419 tn?1360245956
Hey Gal,

It takes weeks to get results, and even longer for the O-band report.

Head better ?

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667078 tn?1316004535
Mine took three weeks and then they did more blood work which took another three weeks. Hang in there,

Alex
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1172359 tn?1310671293
Great!  He told me 10 days and when I talked to him on Thursday he said he will have them back either Friday or Monday.  Guess not!  
I am so freaking dizzy today that I ran into the bathroom wall hard and then fell off the toilet.  I know nice huh?

My head feels much better, no more tap headache.

Cin
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667078 tn?1316004535
Cin.
  Take it easy. It took me a couple weeks to be back to normal.

Alex
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1172359 tn?1310671293
Today I had to do a presentation to the FAA and I bet they thought I was drunk.  I was swaying back and forth.  
It was almost funny.  I had to see the humor in it or I would cry.

Cin
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1040373 tn?1273691088
I'm glad your head is better. I had my LP on 9/4 and knew the results on 9/14.
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1172359 tn?1310671293
Thank you Boston,

It has been 12 days now and I have heard nothing.  I called and left a message yesterday and never received a call back.

What if they come back negative?  Do I have to live with this numbness, fatigue and aching legs for the rest of my life?  My right leg is going numb now.  I noticed the inside of my right thigh was numb this morning.  Its all been on the left side.  I can't lose feeling in my right arm.  
I am not sure if I asked you or not but what was your results?
Cin
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Hi Cin

Remember that if your LP comes back negative it does not mean there is nothing wrong. If this should happen please do not give up the fight, maybe take stock for a while then see where to go next.

Obviously this is such a difficult time, I completely understand that while you do not want MS you DO want answers.

I think you know that whatever happens you will get loads of support on this forum.

Mand
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1172359 tn?1310671293
I told my husband that if it does I will give up, but that was during one of my pity parties.

I will not give up.  I know something is wrong.  It is not in my head (well technically it is), I have lesions on my brain.
It is not normal to feel the way I do.

Thank you for your support and I know that I have so much support on here.  It has really helped me.
Cin
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1040373 tn?1273691088
Arrgh don't you hate when they don't call back??

I don't recall what the results were, just that they supported an MS diagnosis.

You should not have to live with that c rap for the rest of your life. You deserve to know what is causing it and what treatments are available to you.
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1172359 tn?1310671293
The ladies in my department are all over my butt to call the doctor again today and demand the results or for them to atleast tell me they are not back yet.
I hate doing that.  He is a good doctor and I do not want to make him mad.

Cin
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Me again!

With great respect to the ladies in your department, only you know what you are comfortable doing. They mean well but please don't feel bullied into making calls that you are not ready to make.

Of course your results are extremely important but if you don't feel ready to call him then don't

Good docs are a precious commodity.

Mandx
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1172359 tn?1310671293
Well I got my results back and it was normal.  He said that he wants to do another MRI of my brain and neck ( the neck has never been done).  He said that if I have more lesions or if the one I have has gotten larger than he will diagnose me with MS.
If they have not, he is sending me to another doctor that specializes only in MS.  He promised he would get this figured out.
Of course I went to the bathroom and sat in the corner and cried, ok I sobbed.
I cried because I wanted an answer, not because I want something wrong with me.  I should be celebrating that my spinal fluid is normal.
To make the ending of my day more special, I hit something on the way home and ripped of my front end and the wheel well.  Oh what a day!
My boss just called and told me to take tomorrow off for a mental day  To relax and get a pedicure and a manicure.
cin
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739070 tn?1338607002
Sorry the results were not what you were expecting but I had normal LP results as well and still got a diagnosis.

Curious as to who he would send you to as he advertises himself as a MS specialist and this is why my local neuro sent me to him.

Hang in there! We're all here for support anytime you need it. When is the MRI scheduled for?

I'm glad you have tomorrow off. It will be nice to pamper yourself. Enjoy YOUR day tomorrow and try to relax and enjoy the pampering.

Hugs,
Ren
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I'm sorry you are having to go through this limbo, I was diagnosed early on and never had to go through what you are, however I have a friend in a very similar situation to you.

As Ren says, hang in there, it is difficult I know but make the most of your day off and try to enjoy it.

Please stick around here with us.

Mandx
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1040373 tn?1273691088
It sounds like your boss is very understanding. I know it ***** right now, but you have to believe that this testing will all be over soon and your life will settle back down to "normal"....

At least you will have 2 MRI's now so they can be compared.

I hope you get some answers soon! Enjoy your "me" day :)
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1172359 tn?1310671293
Thank you for your support.
This will actually be my third mri on my brain.  The second one is where they discovered my lesion had grown.
Ren, I am not sure yet who he will send me to.  He said that the guy he sending me to only deals with MS.  
I was told I would get a letter in the mail regarding my next mri.  I wonder why he wants one on my neck now.  I have always had neck problems, but I cannot imagine it causing lesions on my brain and my face to go numb.  
I am freaking the heck out because the numbness has now moved up to the inside of my right thigh.
I can't stop crying, is this normal?  I am so depressed and I want to give up.
I am so lucky to have you guys for support but my friends are so supportive and begging me not to give up.  Its so hard not to say to hell with it all.

Ok I am done, I can't see from the tears.
Cin
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739070 tn?1338607002
Your friends are right, don't give up! Limbo is a cr  appy place to be but a lot of us have been there and understand. It took me 4 years to get my dx.

The cervical (neck) MRI  may give the neuro the 2nd lesion so you meet the criteria for separation in time and space for the dx according to the McDonald criteria.

As for the crying...depression is considered a relapse in some people and/or the presenting symptom. Below is a recent link regarding this same subject:

http://www.medhelp.org/posts/Multiple-Sclerosis/Deression-in-MS/show/652883

Take a deep breath and try to relax. Like your neuro said, stress only exacerbates the symptoms. We're all here for support. Feel free to vent anytime!

Hugs to you,
Ren
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1172359 tn?1310671293
Thank you Ren!

I wonder if he thinks I have something wrong with my neck  Anyway, who knows.

Thanks for letting me vent.  I trying to get over my depression.  I haven't cried in about 5 hours.
Nobody understands why I am crying.  My boss told me I should be celebrating because my test came back normal.  People who are not in limbo just do not understand.
I hope you had a great day.
Are you ready for some snow?
Cin
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1172359 tn?1310671293
Ok guys I am know I am annoying as heck, but I have to ask a question and see if you have experienced this before.
My legs are aching really bad, they normally ache, but today it is horrible and I keep getting electric like shocks in my feet and legs, plus my legs are having bad spasms.
My legs also feel so hot.
What in the world is going on?

I am not stressed today, I have decided to be as positive as I possibly can.  So I cannot blame this on stress.
Someone please tell me what is going on!!!

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