Neurologist is concerned its MS

[Jamie_teaches]

HI! I am a 30 year old female living in Texas. In early April I developed a burning pain in my right neck/shoulder that radiated down my arm and eventually got numb and tingly. My orthopedist did Xrays and then MRI of my C-spine and found nothing. He temporarily diagnosed it as Cervical Radiculopathy, but was concerned that there was no evidence of nerve impingement or spinal cord narrowing to confirm that on the MRI.

As I have a cousin with Multiple Sclerosis, he sent me to a neurologist where yesterday I had EMG and Nerve Conduction Velocity studies done on my arm. It showed a grade 1 (lowest level) of carpal tunnel syndrome, but the Neurologist felt that was NOT the reason for my arm symptoms.

I also have been experiencing random numbness in my toes and tingling in my left leg. Last fall I had very bad headaches that would cause my neck to hurt, my eyes to hurt, and migraine medicines my GP prescribed did nothing to help. They eventually went away.

In February I got what I thought was the flu, mostly just had the overwhelming fatigue - lasted for 3 weeks.

Around the time this arm problem started I got sick again - dizzy all the time, felt like I couldn't concentrate, so tired. I was tested for Mononucleosis, strep, Cytomegalovirus, thyroid - all negative. It took 2 rounds of steroids and antibiotics (4 weeks) before I felt normal again.

As of yesterday when I had the EMG and NCV I really don't have any active symptoms now and feel pretty good, but I know that can be typical of MS for it to come and go.

6 years ago I had the same bad headaches and an episode of leg weakness that lasted a few days.

The neurologist said that since the EMG and NCV's did not point to anything specific, and due to my history, we need to look more in the Central Nervous System for possible MS. I meet with him Thursday and he said he is likely going to order a brain MRI and possibly spinal tap to rule in or out the MS.

My question is: does it seem like he is jumping the gun a little here to look at MS? Or, do doctor's truly keep looking if there is no clinical evidence to support why the arm is hurting and tingling? I do worry about the MS possibility. Any comments, advice, thoughts are appreciated.

Thanks,
Jamie

[jenn38018]

I am so sorry to hear that.  I know the feeling.  Just hang in there and try not to lose hope.  Let me know if you need to chat!

[Jamie_teaches]

I had to cancel my neurology appointment that was set for Monday to review my MRI results. Unfortunately the doctor is going out of town and now I can't get in to see him until after July  9th. Ugh!

Jamie

[jenn38018]

Hey Jamie,

Thank you for your sympothies, but I think we are all struggling in some way with our symptoms.  I am trying not to dwell too much on it, but some days it is just really hard to escape it.  Yes, I have definitely been wondering lately if I really have fibromyalgia at all.  I really think there is something there that the doctors are missing.  It is really easy for someone who has been diagnosed with fibro to have serious health problems that are overlooked.  It is all too easy for symptoms to be dismissed to fibro.  My fear is that we keep saying "Oh, its just the fibromyalgia rearing its ugly head again", and we miss a progressive disease that could have been slown down or stopped in its early stages.  This fear makes me come across as being a hypochondriac sometimes, so I have to be careful how I approach doctors with new symptoms.  I know there are many others out there like me who are caught in this vicious cycle.  I just hope we all get the answers we need.  I hope you are doing well today, and I will keep checking to see how your tests go.

[Jamie_teaches]

I read your previous posts about what you are going through with all your symptoms, and I just feel so bad for you. I hope your appt. with the neuro on the 18th proves to be productive. Have you ever wondered if maybe you really don't have fibro at all? I would think the neuro you see will want to do some scans of your lumbar spine in addition to the MS workup to see if there is any evidence to support your back problems. I do tend to still think mine is unrelated since it is so tied to physical activity, weight gain (5 pounds extra from the weekend can send me into spasms) and general laziness with posture and exercise.  Your symptoms are way more severe than mine and you definitely need some answers!

Piece of advice to anyone reading - If at all possible, get a (health insurance) PPO instead of an HMO and then you can self refer to any specialist you want to see without going to a general practictioner for a referral!  I am blessed that my husband works for the government and thus has excellent benefits. :)

Jamie

[jenn38018]

Sorry, I know the last thing you want to see is another posting from me right now!  I forgot to mention that when all of these symptoms started up again, I began having severe neck pain at the base of my skull which grinds and pops when I turn my head any direction.  It is usually accompanied by bad headached which makes me feel very ill.  I also get extremely light headed and dizzy if I look down, like when reading a magazine in the doctor's office.

[jenn38018]

It has only been since I have been posting on this forum that anyone has told me my symptoms sounded like they could be MS (which is what I have thought all along).  I am now pushing to see an MS specialist who knows more about he disease and can give me more guidance.  I am looking very forward to having some testing done and getting some answers.  My symptoms are getting proggressivley worse as the days go by.  I have developed a new symptom in the past couple of days that I wanted to ask Quix about if she is reading this.  I will be walking along or just doing normal activities and all of a sudden I will feel my muscles in my abdominal and side area tighten up on their own.  It feels like someone has put their arm around my waist and is squeezing me.  It doesn't hurt, just feels weird.  Anyway, be sure to let me know what your test results are and what happens.  Sounds like you are on the right path.  I am glad we are being able to help each other by all sharing our stories like this.  I think it is a big step in the healing process.

PS>Sorry for the mulitple postings, but I really wanted you to see the timeline of back pain and onset of other symptoms.

[jenn38018]

I then went to see my rheumatologist that treats me for fibromyalgia.  He said I probably had a torn disc in my back and that he would not be ordering any other imaging on my back either.  He said it would just correct itself with rest and time.  He also did not think my back problems were related to the other symptoms.  He ordered a holter monitor and chest CT to check on the heart symptoms and to see if that was what was making me shake in the middle of the night.  Everyone seemed to be fixated on the shaking episodes and nothing else.  The only test results I have gotten back is that the CT of my chest and head were normal.  I have been waiting over a month for the holter monitor results and told they won't know anything until the end of this month.  He was glad I was going to see a neurologist and told me he thought many of my symptoms could be the fibromyalgia but it is best to be safe than sorry.  Needless to say my doctors have all dropped the ball, because it has taken them over a month to get me in to see a neurologist, and this was at my pushing and nagging and repeated calls. to be continued!

[jenn38018]

I did so, and the pain has stuck with me off and on ever since.  All it takes is me walking in a store too long or loading my dishwasher at home for me to flare up again.  Shortly after all of this is when I started having all of my other symptoms popping up (vibrating and shaking in bed, numbness and tingling in extremities and face, extremely dibilitating fatigue, tongue tied and forgetfullness problems with speech, muscle twitching, hand tremors, unexplainable mood swings unrelated to surroundings or stimuli, tachycardia and irregular heartbeat, intolerane to heat, weakness in muscles, feeling of heaviness and falling into floor, gait is off, extreme sensitivity to light with eye pain, blurry vision, dizziness and lightheadedness, internal buzzing feeling, etc.)  I went to my GP for all of this and she said they weren't going to do any imaging of my back because I am young and all they would do even if they found something is just have me rest my back.  She didn't feel like my other symptoms were related to the back trouble.  She started the referral process to send me to neurologist to see if I was having seizures in my sleep.  She didn't seem concerned about MS even though I had been tested for it during two other relapses of these symptoms in previous years.  to be continued!

[jenn38018]

My back pain started one day when I was putting my little girl in her car seat.  I slightly leaned over her carseat to buckle her in and then had horrible lightning pain when I tried to straighten back out again.  It was all I could do to sit up in my seat long enough to drive us home.  I couldn't walk or sit up without having unbearable pain.  The pain shoots down my spine to my tailbone, then radiates around my right hip and down my right leg to my toes.  I called my doctor and they told me I probably just pulled a muscle and to rest on it for a couple of days and take muscle relaxers and pain pills.  The meds did nothing except make me sleepy, but i stayed in bed for several days and started to feel a little better.  After a couple of weeks I seemed to be back to normal.  Then my mother had bilateral knee replacement surgery.  While in the hospital she and the PT needed help getting her out of bed.  I helped to stabilize her and her walker, but didn't do any strenuous lifting or pulling or anything.  After we got her back in bed I slightly leaned over her bed to put the pressure boots back on her legs.  When I went to straighten back out the pain was back.  It took my breath away and I almost hit the floor.  My chin and lips started going numb.  They sent me down to the ER and I was xrayed.  Nothing was broken, but they said they wouldn't do an MRI in the ER.  I was to follow up with my GP the following week and go back to bedrest and meds in the meantime.  to be continued!

[jenn38018]

Sorry for the blank comments.  Looks like they have changed things up a bit.  

About your back pain, it is interesting you bring that up.  I have been having horribly dibilitating back pain for a few months now.  I thought it was totally unrelated to all of my other symptoms I have been having because that is what my doctors led me to believe.  My best friend is an occupational therapist though, and yesterday she told me she had a patient with MS.  As she was doing her work up she asked her what her first symptoms of the disease were.  The woman told her that horrible lower back pain was her first noticeable symptom.  My friend knows ofcourse all of the symptoms and trouble I have been having lately, so this ofcourse concerned her.  Neither she nor I had ever heard of lower back pain being a symptom of MS.  


I am going to have to continue this posting because of the limit!

[T-lynn]

I had no bands when checking for lyme,I was tested in 1998 and again in 2004 by good facilities.

My MS was Dx'd by a very good neuro and confirmed also by the cleveland clinic MS Mellon Institute.

I'm sticking with threir Dx.

Thanks for the info on Lyme.

[Quixotic1]

I mispoke about the EMG.  The study is not only to determine muscle functionality but also whether the nerve connections to the muscle are intact and functioning properly.  Sorry for leaving that out.  Quix

[Jamie_teaches]

Quix, thank you for the explanation about radiculopathies - I know now that even though there was not an immediately obvious reason to me for doing the leg EMG/NCV, it is likely to help the neuro decide if my symptoms are in fact coming from the CNS. He asked if my back problems had been confirmed in any other way in 2001, and of course they had not.

I didn't mention yet that he has said to me I may end up seeing a rheumatologist after the results of the MRI's are in. My grandmother had extremely bad RA - she was on a cane at 35, walker at 45, and in a wheelchair by 55. I have not even had a chance to tell the neuro that I wake up with achy hands most every morning. That is how my grandmother's RA started. A cousin of mine who is 35(not the one with MS) has already tested positive for the RA factor. I have not been tested for it yet. Is there any chance RA could be causing this?

Also, Quix you might know this - I have vitiligo on my hands and creeping up toward my elbows. The neuro was "interested" in this and mentioned to me that vitiligo can cause nerve problems. I have not been able to find much on the correlation of these 2 things, but I do know that vitiligo is yet another autoimmune disorder. Maybe I just fall into that category of having more than 1 autoimmune disorder?? I also have patches of psoriasis.

Tory, he did ask me about tick bites - of which I have not had any - quite possibly as a kid in girl scouts, but that would have been many years ago.I know he is considering that.

I had just had blood work done in April to rule out EBV, Mono, CMV and I think at the time they ran the ANA and Sed rates, so my primary doctor is sending those to him to look at. He said he would get more blood work if necessary.

Thank you so much for all your support!
Jamie

[tory2457]

Good news that you were tested both with ELISA and IgeneX. Do you have your results for IgeneX?  I too tested negative (CDC criteria) but I did have numerous bands that were either IND or Positive, both on the IgG and IgM. Having just one band IND or positive can be an indication that something is going on....this is why a clinical diagnosis is required.
I don't consider myself along with so many others to be that uncommon. Asking for your IgeneX test results and posting the results on lymenetdotorg could very possibly lead you to rethink these negative results.

[T-lynn]

I see my GP on Monday for the site reaction open sore.I talked to MS Lines yesterday and the nurse there stated for my size the Auto injector should never been set on 3.

And yes I meant mgs instead of mcgs.Boy I wish they had a mircle pill for memory.I hate those dang infusions,but they do help.

So far other than fatigue I have never had flu like symptoms with rebif.

I am now self injecting VS the auto-injector,it's easier and I control the depth.

Tory
I was tested for Lyme through Elisa and Igenex,both negative

[tory2457]

Here's just a small portion of what is known regarding testing for Lyme Disease.

from the National Intitutes of Health
NIH: “Until better tests are available, the diagnosis of Lyme disease must be based on characteristic clinical findings in which the results of laboratory tests play a supportive role.
from the FDA
FDA: “A patient with active Lyme disease may have a negative test result.”The sensitivity and specificity of the currently used tests for Lyme disease are not adequate to meet the two-tier test approach being recommended. Ideally, a screening test should have a high degree of sensitivity
ELISA: Sensitivities of 3 commercial ELISAs ranged from 36.8% to 70.5%WESTERN BLOT: The sensitivities of the IgM and IgG immunoblot for detecting patients who were seropositive into the study period were 58.5 and 54.6%  Luger and Krause found up to a 56% false-negative rate. [IDSA-recommended tests are antibody tests, and only 70% of the documented Lyme patients in these 2 studies had a significant antibody response.

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=055565
***
You might want to consider being tested for lyme through a lab that is considered  "sensitive" and in fact will test for all the lyme bands.

Many of us did in fact test negative using an ELISA,,,,then later tested positive through IgeneX.

best to all,
tory

[Quixotic1]

When I had my steroid infusions as an outpatient they gave me 1000mg (I think you mean mg instead of mcg) of SoluMedrol (methylprednisolone) every day for 5 days.  If you required insulin for the 250mg you will certainly require it for 1000mg.  Good luck.

From what I've read it takes several months for the Interferon to slow the progression of relapses.  I don't think you've been on it long enough to know if Rebif is failing.  I wish you the best.

Also, I don't think that accidentally entering the muscle caused your injection site problem, but I'm not sure.

I have been on Avonex (1 IM injection per week) for 4 weeks.  My side effects have been about 36 hours of tolerable muscle aches, maybe an increase in headache. Not too bad.  I have noticed that each week the reaction has been a little more severe.  We're still not talking bad at all.  

Quix

[Quixotic1]

Jamie - The EMG is an ElectroMyogram - it is a study of the functionality of the muscle being tested.  If the muscle is not damaged, the test will likely be normal (I think).  Thus, if you were having sensory symptoms only like tingling or pain the EMG might not be helpful.

The nerve conduction study NCS will test for full function of the nerve, including the velocity of the nerve conduction and the amplitude of it's signals.

A Radiculopathy (remember that  *pathy - means disease of *) is dysfunction of a particular nerve coming from a spinal nerve root.  It can be sensory or motor.  If, indeed the nerve is damaged by disease or compression or injury that damge should be measurable by a change in it's ability to transmit its signals.    However, an injury or problems with the nerve any where farther out will show the changes beyond the site of injury.

I think, by definition, they only call it a radiculopathy when it can be traced to the nerve root, but I am not sure of this.  (the "radic" is from the latin for "root")

In answer to your question:  

If the MRI shows no nerve impingement and the EMG/NCS is also negative, then they can assume (again, I think) that the problem (pain, tingling) is higher (ie. CNS).  

If the MRI shows nerve compression and the EMG/NCS is normal it would indicate that the compression has not caused damage.

Oh.....I can't think tonight.  Let me do some reading later and I'll see if I can think this through.

Lynn - Are you saying the injection site "is sore" or "has a sore"?  There are reports with Rebif (but actually with any injectable) of having bleeding or tissue damage at the injection site.  The actual literature on Rebif reports rare cases of local tissue necrosis (localized tissue death) at the site.  These all healed with simple wound care.  I would not inject any near that site until your doc or his/her nurse has seen the problem.  Okay?

Quix

[T-lynn]

Sorry on the babinski,I gave wrong info---brain don't always work right.

I'm quite familiar with radiculopathy----mine was detected through an EMG/NCS.But keep in mind I have had 2 lumbar surgeries with instruments to stablelize the spine.The DR that done my EMG/NCS done the spine and the extremities.The last EMG/NCS I had the lumbar and thoracic radiculopathy has been improving through physical therapy and strengthening exercise.

Quix,have you started any of the disease modifying meds?You stating your a physician ,I hope you don't mind me asking,I'm on rebif and I had been using a the auto-injector,now self inject.I have one spot that I Hit a muscle and now theres a sore there the size of a pencil eraser thats indented.Its pretty painful.Should this be a concern.

I have been on rebif for 5 months and have had 2 relapses.One major a 5 day hospital stay in March and starting another round of solu-medrol on monday at home.The last time I was on solu-medrol I had to take insulin.They done the infusions at 250mcgs every 6 hours and now they are doing them at 1000 mcgs at one time.I'm afraid this will send my insulin levels over the edge.Even when I'm on prednisone I have to take glugophage.Any other time my sugar levels are great.

Jamie, when they done my EMG/NCS they did the spine area as well as my 4 limbs.My understanding is they have to do the spinal area to tell if there's radiculopathy.

When I had my last lumbar MRI and a myelogram it shows no nerve root cut off or spinal canal impingement.Thats why they had the EMG/NCS done.

I'm very impressed with your DRs.They are treating you aggressively and properly.If there are herniations or other spinal problems sometimes physical therapy can cause more harm.Once these images are done then a proper coarse of treatment can be taken.

[Jamie_teaches]

Quix, I hope you can help me understand this more. In terms of the radiculopathies, should they show up on the EMG/NCV studies? When he tested my arm nothing showed up. Also, I assume he is doing the EMG/ncv on the legs PLUS the lumbar MRI to see if the 2 support each other? IE, if my MRI shows the herniation still (as it did 6 years ago) and my legs don't show anything, he will believe my back troubles are unrelated? Or if he DOESN'T  see any nerve damage in the legs does that UN-support the MRI (thus indicating I have a benign herniation)?

CONFUSING - sorry!!

[Jamie_teaches]

Absolutely join in! I was kind of waiting and hoping you would after reading some of your other posts...thank you! Yes, I am an elementary teacher - both regular and special ed.  Thanks for helping us out with the definitions. I have read TONS about MS - had read tons back in 2001 when some weird stuff happened with my legs, but then like most just put it all out of my head for the last 6 years.

I was asking about "jumping the gun" because my husband is a physical therapist and he is shocked by all this - he can't believe that neither the ortho or the neuro has not yet said, "yeah, it's probably just a cervical radiculopathy that didn't show on the MRI, let's just send you to some physical therapy for a few weeks and see if that helps." Naturally he thinks this is all a bit sudden. However, I tend to not tell him every time something happens because he hears it so much every day all day that it often falls on a deaf ear when I do. Like I told him though, I myself HAVE asked point blank if we could just do some PT and both doctors said no - we need to keep looking. So, I guess that answeres my own question.

My tests are next Wednsday and then I get the results on Monday June 18th, so I will keep you posted. Thank you for all of your replies!

Jamie

[Quixotic1]

Hi, to both of you.  Jamie, as Lynn knows I have just been diagnosed with MS.  May I join the discussion?  As a physician, one thing I can add to these discussions are medical explanations for what is going on.  I don't think the neuro is jumping the gun at all.  When there are abnormal symptoms and an abnormal exam you've got to complete the testing.  It sounds like your doc is on the ball.  You're lucky.

the Babinski test - You want a negative Babinski test.  The "normal" person will have a downward motion of the big toe when noxious stimulus is applied to the bottom of the foot.  No movement is also considered normal.

A (+) positive Babinski - the great toe will move upward.  This is abnormal and indicates disease of the spinal cord or higher.  This is what is called Upper Motor Neuron disease.

Lynn, I don't mean to come on and contradict you, because I really respect you, but thought you would want clarification on some of the terms you were using.  There's really no way to do it that doesn't seem rude.  Please forgive.

Radiculopathy - This just means damage to a nerve that has left the spinal cord.  Lumbar radiculopathy indicates nerve pain coming out of the lower back (lumbar spine) nerve roots. Another term for it is Lower (Motor or Sensory) Neuron Disease  While it certainly is seen in MS, it is not especially associated with MS.  More often it is structural (injury or arthritis) at the level of the vetebrae.  Radicular just means that the pain or numbness or paresthesia "radiates" along the route of the nerve.

Hey!  There's a limit on the message length!  Foul! Quix

[Quixotic1]

rest of post:

Jamie - yeah, Lynn is right.  You're not supposed to fall over with your eyes closed.  You failed.  Finger to nose - F again.  Are you a teacher?  Don't let your kids know! lol.  These two tests are for brainstem function - balance and hand-eye coordination.

The thing about MS that Lynn was saying is "if it can go wrong with the brain, spinal cord or a nerve, it can be seen with MS."

Do you mind if I join your discussion (if I'm nice)?  Quix

[T-lynn]

That I'm not sure,my right foot doesn't respond,absent reflex,the left foot toes flair and big toe goes downwards.

Normal test the toes go upwards,but some neuro's say no response is normal also.

Did this DR check your abdominal reflexes?