Multiple Sclerosis Community

Hi Jen

The short answer is yes as it is possible to have liasions in the cervical or thorasic spine but not on the brain.

I am going to post a coverall post of mine allthough I know you have had some of the tests but it will let you see whats ahead of you to hopefully rule out MS alltogether.

If you suspect MS as the cause of your symptoms you need to try the following.

1 Find a neuro who specializes in MS or an MS care center, try www.msneuroratings.com for patient reviews on a state by state basis.

2 Be prepared to undergo all testing the require which may include,

A MRI's of the brain and cervical spine with and without contrast to look for active and inactive liaisons.

B Possibly a lumber puncture/ spinal tap to look for proteins and O-bands in the fluid around your brain and spine.

C Evoked potential testing to check the speed of your nerve responses, any delay can indicate inflammation.

D A complete neuro workup and a review of your medical history, try to keep a journal of your symptoms and how long the last and any triggers you can think have.

After all this which can take some time, you can hope that a specialist has enough info to make a diagnosis or at least rule out MS altogether, all though there are no guarantees as we often see false negatives or inconclusive results

For now find a specialist and follow his/her advice , let us know how you are doing and know that most of us have been where you are and indeed some on here still are there.

Hope this helps and please know that many on here have been where you are and indeed others are there with you.

Rory

Hi Rory,

Good to hear from you, anyways my Neuro pretty much dismissed MS by that test only. He doesn't even have the EMG results. (which I know was not right cuz the tech was like you should of felt that , or that should be much stronger. This was done somewhere else..The actual Neuro that came in didn;'t give me much time stuck some pins in and said something about the right side. and said " It must be a nuisance" Anyways my neuro said low B-12 on top of the vit d -B-12 350 not that severe. Was ready to dismiss. And i said "I'm not prepared to give up on this, I have been having to prop my plate on a pillow cuz arms to weak. and I have 4 family members who have passed cuz of Muscular dystrophy although childhood & boys on dads side. He recommended a Neuromuscular doc far away, I am going to go see the Neuro at the place i did the EMG i called his office and spoke of his early dismissive attitude and they said cuz i wasnt his patient and doesnt know the whole story,I will give him a chance. IF not MS it is def something,I'm 39 yrs old and these symptoms are NOT NORMAL and not anxiety. As you and many others know it is life changing. I wasn't like this and now i am, and there is a reason for it. Just not prepared to give in based on one Brain MRI, I had a cervical MRI 2yrs ago for neck pain. I have noticed my sciatic nerve is acting up and now instead of "burning " in my feet its in hands and pelvic bone and hip.

Thanks so much for listening to my story!!
Hugs to you

Jen

Hi Jen

If one MRI is all the testing they are going to do it is time for a new doctor and a second opinion.

If at a minimum the are not going to follow the outline I gave above they do not know much about MS.

You have the right idea do not give up and as I have said on here before advocate for yourself as only you can do it best.

Rory

Rory

Yes he the Neuro at a top place said he specializes in headaches & strokes and referred me to his colleage only after my persistance. But it is a Neuromuscular specialist and it is far away. So i am going to give the Neuro that i had the EMG done at which is closer (not the Neuro i see the one that ran the test) to see if he will take the time to listen. THey are so sure that it is not MS. IF it isn't then what makes my symptoms so different?? (I honestly don't want anything, just answers) Its just so frustrating that some people can get testing and i feel as though i have to fight for evreything,Maybe its my insurance, why is their answer always stress. They don't stick evreyone that has symptoms on anxiety meds when they have numbness. When i called the Neuro office before to inform that my left side of face was numb for over 5 hrs they prescribed CYMbalta. Which I have stopped it didn't do a darn thing for me. I am now on the Neurontin 300mg 3xday along w the Xanax ( I Haven't noticed anything better) my sciatic nerve is really bothering me along with my pelvic bone (burning)along with feet and hands.
Thanks so much for your help!!!!

Jen

Good morning Jen,

I am new here but saw your post and had to respond.

Like you, my first attack did not show any lesions on my brain. I had MRIs of my entire spine and there was a single lesion in the thoracic spine. Lumbar puncture did show O bands.

My Neuro diagnosed me with Transverse Myelitis. A single lesion and I was told that this was also considered Probable MS. A 33% chance that I would have another attack.

3 years later another attack did show lesions on my brain and now have an official MS diagnosis.

The DR also looked at Guillain Barre as a diagnosis. My DR told me to educate myself. Your symptoms are real. If this Neuro isn't listening to you, find another one.

Wishing you all the best!

Suzet9,
Welcome would love to talk to you!!Thanks for the reply; I absolutley agree these are real symptoms. But the docs just don't take you seriously. I am going to push for more testing at least to rule in or out MS and to find out what is going on. If i took evrey med that docs had prescribed i would be dead. Because they just keep prescribing more & more. I am on 6 right now. I have my Ureologist apt today to see if i need some bladder surgery done for leakage. And results of my Ureodynamics test. Friday have apt with Gyno to talk about hysterectomy (prol uterus,fibroids,dense adhesions) anyways want to do both at same time. Friday i also go see a diff Neuro the one i had the EMG done with and see if he would perform more testing. The last i would say 3 months has been alot worse. I need answers soon.
Thanks again;

Jen

Rory,
Sorry to ask but is the Evoked Potential the same as EMG??I will get my results from the EMG this Friday.. I think they should do the MRI with contrast. And prob should do the Lumbar Puncture, Doesn't it test for other diseases as well?? MY PCP doc did mention a muscular disease but I can't even think of the name right now?? How would you approach this Neuro would you just hand him a symptom list along with abnormal tests results?

Thanks for your help;

Jen

Hey, without being a specialist, I can add some on the EMG. When they did my right wrist, they had to turn it up really high. He said this is because some wrist are fatter than others. Also depends on how deep the nerves are. My right leg, he had to barely turn it up.

Now he could be lieing but thats what he told me, not abnormal. The other thing about the right side was that the nuero put the sensors on(im guessing) and told the tech to test the right side due to your symptoms.

BTW, don't use any nuero I have found. My new nuero says that they will say anything if they can't figure it out. "Thats what pays their bills." You need MRI of spine and head with/out contrast.

Relax too. I have read that some have gone 9yrs till their official dx due to lack of proof and a laundry list of symptoms.

Don't ever tell the nueros what you think it is. They will turn it around on you. There are books out their that can help you deal with these docs and without me knowing what I know from them, I wouldn't be as calm as I am today.

Good luck

Hi Jen

I have never have had either so this is a lay mans educated guess.

EMG measures muscle responses to stimuli while EVPS measure the nerve response time. When we think about it if the nerve is inflamed by an attack it will have a slower response than a healty one.

Contrast should always be used on the brain MRI as it helps highlight active liasions. It is not considered nessecary for cervical or thorasic spine as it is a harder tissue than the brain and doesn't need to be highlighted.

I would hold of on the LP until you have the results of the MRI's as the may be enough for a definate diagnosis one way or the other on their own.

You should try to keep a symptoms journal showing, what the were ,how long the last, what triggered them such as heat,humidity ,cold ,a hot shower ,bright sunshine ,stress and possibly a host of other things.

Most neuros appreciate this as it gives a overall view without them having to go through every page of your history.

Some neuros ask that you send your old results ahead so that they can have an chance to review them so you could ask them.

Hope this helps.

Rory

jrswannie1 and Rory

Thank you both for your suggestions.. I am going to keep some kind of diary at least of what symptoms i am having that day. I know that if i am in a hurry i slur my speech, and lately have been loosing my voice. Heat def plays a part ..I even get very flushed in the face..When i'm in the shower i see floaters. Do you guys have any suggestions for cramping was in my feet and hands now in my pelvic bone hurts so bad!! I think a brain Mri with contrast should be done & the other one you suggested. They shouldn;t just give up.

Thanks again;

Jen

Really the good luck. Be prepared for a long road though, both me, csewhappy, and others here have been waiting awhile. I am not saying we all have MS and are not getting the Dx, I am saying we have real problems that effect our everyday.

I can cry how bad I know something is wrong but still just chillen. A friend told me you dont need a Dx to get meds to help your situation. With that said, my next appoitment, i am asking for something to help with the roaming numbnesses and eye issues.

GL

Wishing you the best of luck in finding some kind of relief, and a doc that actually believes you.. I cry often because i just want to wake up and not be in pain.. If anything thats what makes us depressed not the other way around. Sometimes i start to second guess myself.. My meds are doing nothing to help and they just keep piling them on. I just want to be "normal again" and not feel evreyday as if i just came out of surgery. Im sure you all feel the same way.

Hugs to you!!
Jen

hi Jen. im going thru something similar right now and just read your story. how are you and what was the outcome? please w/b im in dispair.

Thanks,
Kristin

Hello Jen,

I have been diagnosed with MS for 12 years now. Twice a year I fly from Alaska to Seattle to see my MS doctor. Don't settle for whom ever happens to be around you area!

As Rory said, find a neuro that specializes in treating people with MS. This is important, I can't stress this enough.

Best to you,

Dave