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Diagnosis questionable

Hello,
I am a fifty year old female who has been experiencing tightness and pain in my neck and left arm for several months. The pain is like hitting your funny bone and getting the electric like shock followed by numbness and tingling I first saw a pain specialist who sent me to physical therapy for 6-8 weeks with very limited success. I then had an MRI of my cervical spine w/o contrast which showed a slight bulge inthe discs and some questionable indicators of MS. I then had a full MRI to see if there were visible lesions on my brain.  According to the neurologist, there were none.  In the process of helping with the pain and discomfort of the almost constant numbness and shooting pain down my left arm and the intense headaches and severe tightness in my neck and shoulder, the doctor arranged for a steroid injection into my spine.  This did nothing to alleviate the pain.    
I think it is important to note that I was going through an extremely stressful period at this time, and had been since earlier in the year when the symptoms first became so severe. The pain doctor started me on Gabepentin and only a day into it, I started experiencing severe vertigo and an overall feeling of being under water trying to function combined with extreme fatigue and sluggishness.  I also had extreme tightness in my neck and left trap.  The doctor advised me to back off on the medication and gave me a script for a muscle relaxer.  After about a week and a half of very uncomfortable days and sleepless nights, I eventually started feeling a bit better.  In the mean time, I have had a surgical consult for my neck which the surgeon agreed he could do but he wasn't convinced that my symptoms weren't being caused by something else as the disc issue was not "bad enough" to cause such severe symptoms.  He advised me to finish a complete neuro work up and get back to him. I went ahead with every neurological test that was possible, including a spinal tap.  None of these tests have come back with any abnormal results. My symptoms of numbness and tingling have only gotten worse and both arms/ hands seem to be affected now.
A repeat cervical spine MRI was ordered - this time with contrast.  The same day I had the scan, the Dr called insisting that he could  now see a very clear lesion on my spine and wants me to start on treatment for MS yesterday!  Is it possible to have every test come back normal and still actually have MS?  I have, of course done a lot of reading, and have read about various symptoms which are associated with this disease and I don't believe that I have experienced anything like the stories I have read about.  Any information you can provide would be greatly appreciated.  

Thank you in advance for any suggestions or questions for my doctor to help me know what is right.
Mick



9 Responses
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1831849 tn?1383228392
Hi Mick -

Good doctors, of any kind, are a Godsend. I'm glad you found one. I can speak from experience that a skilled neurosurgeon can make life muc, much better :-)

Unfortunately I also know from experience that having back/neck surgery doesn't exempt you from having MS. Your lesions bear watching, and should your surgery not fixx all your issues you have a good place to sart your investigation.

Let us know how the surgery goes.

Kyle
PS Exaggerated reflexes are often described as Brisk.
Helpful - 0
Avatar universal
First let me say thank you all for your warm welcome and thoughtful responses. I did go to my appt this morning with a spine surgeon that I had scheduled prior to my neurologists recommendation to start MS treatment. I am so very glad that I didn't cancel based on one doctor's opinion. This doctor could give lessons to all in the medical profession!

He was completely prepared having gone over every single detail of my neuro work up. He read all of the clinical and radiological reports and had very specific notes.

He did a physical exam which showed many hyper sensitive reactions which he said indicated nerve damage or trauma. ( don't remember the specific words he used, but he did the same tests on my husband who was with me for the appt. and my husband showed normal reflex reactions.

He proceeded to show me all of my MRI pictures which do show two areas that appear suspiciously like MS lesions.  He then showed me the x-Rays taken of my cervical spine with my chin tipped up and then down.  These pictures were never shown to me.  The radiologist report mentioned a slightly abnormal curvature and a possible spur.  There was nothing noted about the fact that the bones were completely out of whack.

When shown a healthy x-Ray in comparison, there is absolutely no doubt that my symptoms are being caused by arthritis in my spine which is causing my neck to be unstable.  As I had indicated from the very first visit with the neuro dr. my symptoms were exacerbated depending on the position of my head .

The repetitive jarring or mis alignment is causing serious damage to the spinal cord and nerves and this appears on an MRI to be very similar to a lesion from MS.

He went on to show me multiple examples of similar cases to mine.  He showed me The scans from several patients complaining of very similar symptoms to mine, but not having any clinical indications of MS.  He was extremely thorough and showed how a fusion to stabilize the weakened bone could in many cases eventually heal the lack of space surrounding the spinal column and subsequent MRIs appeared much healthier.

After meeting with this doctor and having him take the time to show me what the neurologist never did, and the radiologist were obviously not paying attention to, I have decided to schedule an anterior cervical surgical correction.  

This will include removing C5 and replacing it with a cadaver bone and then fusing the weakend bones to create more stability.  The surgery is not without risk, but was just  the most obvious direction.  I will be calling my neurologists office to discuss my plans.  I don't imagine he will be happy with this decision, but my husband and I feel it is the correct one.

Wishing you all the best with wherever your journeys take you.
Thank you again for such wonderful support.
Mick

Helpful - 0
11119474 tn?1428702170
Hello and welcome to the group.

I am going thru the long and tedious process of searching for a diagnosis.  My general neuro did prescribe a course of solu medrol infusions white I wait for the appt. with the MS Specialist, and it helped me tremendously.  I would say a 50% reduction in numbness and pain.  I can't advise you on what is best for you, but am only sharing my experience.  Wishing you much luck.

~Linda
Helpful - 0
1831849 tn?1383228392
Hi Mick

Just my thoughts on steroids. IV steroids should not effect an MS doc from diagnosing MS. Steroids do not effect the appearance of MRI evidence. They will show up before during and after steroid treatment. The steroids will only reduce inflammation, and hopefully relieve symptoms.

Steroid relief should not impact the clinical exam, if being done by an MS specialist.

Kyle
Helpful - 0
667078 tn?1316000935
Neurologist seldom speak so patients can understand them. What I would like to know is was your neurological exam abnormal. That is reflexes, following the finger and such. Mine was abnormal and that is what set on my MS journey. Doctors seldom tell you what they find. I would ask what that showed it is more accurate than a MRI.

Alex
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
:D i'm not sure i'm not the one confused.....

you asked...
Q: i am wondering if you would agree with my decision to see an MS specialist in the state prior to starting any steroid infusions?
A: When ever MS is on the table, i generally believe seeing an MS specialist is better than a general neuro, it can also aid in feeling more confidence in the diagnosis too, so getting the opinion of an MS specialist is a good decision.

In regards to holding off on the prescribed steroid infusion until after the second opinion, that may actually not be such a good idea. The thing is i honestly can't in good conscious, give you approval for going against your doctors prescribed treatment, i'm just a lay person and you really need to trust your doctors recommendations......

Unfortunately, to do or not to do IV steroids is a personal choice for various reasons, it often depends on the severity of the relapse and the type of symptoms your being hit with, as to whether they are prescribed or not. In MS IV steroids are recommended because it reduces inflammation and can shorten a relapse, which ideally reduces the level of damage the relapse can cause.

I think you would probably benefit in speaking with your neuro and discussing your concerns!

Cheers..........JJ

  


Helpful - 0
Avatar universal
Thank you for your quick and thorough reply.  Sorry for my rambling post.

Just trying to make sure I understood your reply.  

From what I understand you are suggesting that there may be more clinical evidence than what the neurologist has shared with me?  I Am sure that any omissions were not intentional, however he is the kind of doctor who does not communicate very well.  Not only does he have a difficult accent to understand, but he also speaks very fast.  He has a tendency to rush to action rather than take the time necessary on the details..

I have an apt. scheduled for a second surgical opinion tomorrow AM with a doctor who will also have access to all of my test results, so am hopeful that he can give me a fresh perspective.  The neurologist was very adament that surgery was no longer an option but I feel that the appointment will be worth my time.

i am wondering if you would agree with my decision to see an MS specialist in the state prior to starting any steroid infusions? I need a better diagnosis or am afraid my insurance company will deem them as experimental.  

Will also need to read more within this great website in order to educate myself enough to  understand the results of all of the tests that have been done.

Thank you again for your reply, please let me know if I have understood your reply correctly.  I appreciate your help more than I can say.  This is all a bit frightening to me.  
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Hi Mick and welcome to our little MS community,

You asked.....

Q: Is it possible to have every test come back normal and still actually have MS?
A: It's very unlikely to be a condition like MS, If EVERY neurological test (clinical, brain MRI, spine MRI, LP, VEP etc etc) are all perfectly normal.

Keep in mind that not 'every' test you had, did actually come back 'normal' from what you have mentioned so far!    

**"cervical spine w/o contrast which showed a slight bulge inthe discs and some questionable indicators of MS. I then had a full MRI to see if there were visible lesions on my brain.  According to the neurologist, there were none.  "

**"A repeat cervical spine MRI was ordered - this time with contrast.  The same day I had the scan, the Dr called insisting that he could  now see a very clear lesion on my spine...."

Your spinal MRI's were not normal, there was something picked up in the first MRI as possible lesion(s) but didn't become more clearly identifiable as at least one lesion until the MRI was repeated. I think it's 'possible' that your brain MRI did have some non specific lesions too but because of your age group of 50+, they were put down to 'normal' ischemic vascular lesions and discounted (which often happens).

The main reasons why i'm thinking this 'could' of happened, is that one spinal cord lesion is NOT enough diagnostic test evidence to be diagnosed with MS BUT non specific brain lesions plus a spinal cord lesion, would definitely put MS very high on your list of most likely causes. It would also make sense of your neuro calling with the diagnosis of MS and wanting you on one of the MS disease modifying drugs (DMD's).....btw that must of been a shock - HUGS!

There is a lot more to being diagnosed with MS than one MRI spinal cord lesion, so there just has to be more evidence eg clinical signs - abnormal neuro test, brain and or spinal cord lesions, LP, nerve tests etc  It may be helpful to actually read your neurological assessment and MRI reports, to see if there was any noted clinically abnormal and see what exactly was found on your brain MRI, and look at anything that specifically identifies your spinal cord lesion as an MS cord lesion etc.

Food for thought..........JJ      

  

  
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Could you please try to brake up your posts into smaller text blocks, many people with MS have visual issues (and or cognitive issues) that makes reading large blocks of text very difficult, ta :D

re-posted with visual brakes added....

Hello,
I am a fifty year old female who has been experiencing tightness and pain in my neck and left arm for several months. The pain is like hitting your funny bone and getting the electric like shock followed by numbness and tingling I first saw a pain specialist who sent me to physical therapy for 6-8 weeks with very limited success.

I then had an MRI of my cervical spine w/o contrast which showed a slight bulge inthe discs and some questionable indicators of MS. I then had a full MRI to see if there were visible lesions on my brain.  According to the neurologist, there were none.  

In the process of helping with the pain and discomfort of the almost constant numbness and shooting pain down my left arm and the intense headaches and severe tightness in my neck and shoulder, the doctor arranged for a steroid injection into my spine.  This did nothing to alleviate the pain.
    
I think it is important to note that I was going through an extremely stressful period at this time, and had been since earlier in the year when the symptoms first became so severe. The pain doctor started me on Gabepentin and only a day into it, I started experiencing severe vertigo and an overall feeling of being under water trying to function combined with extreme fatigue and sluggishness.  I also had extreme tightness in my neck and left trap.  

The doctor advised me to back off on the medication and gave me a script for a muscle relaxer.  After about a week and a half of very uncomfortable days and sleepless nights, I eventually started feeling a bit better.  In the mean time, I have had a surgical consult for my neck which the surgeon agreed he could do but he wasn't convinced that my symptoms weren't being caused by something else as the disc issue was not "bad enough" to cause such severe symptoms.  He advised me to finish a complete neuro work up and get back to him.

I went ahead with every neurological test that was possible, including a spinal tap.  None of these tests have come back with any abnormal results. My symptoms of numbness and tingling have only gotten worse and both arms/ hands seem to be affected now.

A repeat cervical spine MRI was ordered - this time with contrast.  The same day I had the scan, the Dr called insisting that he could  now see a very clear lesion on my spine and wants me to start on treatment for MS yesterday!  

Is it possible to have every test come back normal and still actually have MS?  I have, of course done a lot of reading, and have read about various symptoms which are associated with this disease and I don't believe that I have experienced anything like the stories I have read about.  Any information you can provide would be greatly appreciated.  

Thank you in advance for any suggestions or questions for my doctor to help me know what is right.
Mick
Helpful - 0
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