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Old 07-02-2012, 07:16 AM   #1
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Never saw this comming

Hi everyone, I went to my PC Dr. in March complaint of right arm and elbow pain and electrical like pains in my left knee. He sent me for blood work for arthritis conditions. Diagnosis tennis elbow and he could feel fluid under my knee cap. Off to PT for my elbow I go. Told the PT about my tingling and she sent me back to my PC to get referral to treat nerve neck compression. After a long conversation with PC about my body and an exam he leaves the room and comes back and tells me he thinks I have MS.
Never saw this coming! So now I have referral to othomologist, neurologist, X-rays of spine and more blood work. This is so scary and I just needed to vent. Have not had the nerve ( play on words, haha) to tell a single soul not even my husband of 33 years he will lose it with worry. Thank you for allowing me to post on this forum.

 
Old 07-02-2012, 09:58 AM   #2
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Re: Never saw this comming

Welcome.

First off, you certainly live in a beautiful part of Arizona!

I do not think any of us ever saw the "MS train" headed toward us. While the doctor looks towards MS, you still only have a 1:400 chance of having MS and even if you do, please know that your life will go on because life does not end with MS. I wrote a thread regarding MS myths. I would encourage you to read it as well as printing a copy of the Revised McDonald Criteria.

Please feel free to vent often if needed. You are not alone in this and we will be here even after you get a diagnosis. Do let us know if you have questions and if it turns out to be something other than MS, we would still like to know. There are about 400 diseases/disorders which can present with MS like symptoms, but most of these diseases/disorders are treatable. Fear and anxiety at this point are not needed and even if you have MS, fear and anxiety are still not needed!
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Old 07-02-2012, 01:35 PM   #3
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Re: Never saw this comming

Hi there and wow! First off, welcome to healthboards and you are most welcome to post any vents you might have....but as Jayhawk said, its not overly likely that the doctor is correct about this. Most PCs cannot diagnose MS- and MS is very specific in its diagnosis.

Seeing a neurologist is your best bet; however a MS specialist, one who deals ONLY with MS and not the millions of other subspecialties which neurologists deal with, would be better.

You mentioned Xrays. MS wont show up on an Xray. A MRI is the gold standard in testing for MS and youll want a brain and Cspine MRI with and without contrast...unless you show lesions (scars) from autoimmune attacks, MS is not your worry...if an Xray was to show something, that would mean its a spinal issue, and not a MS issue.

Whatever happens, please keep us informed and know that if you have any questions, we are here to help.

Hugs,
Nikki
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Old 07-02-2012, 08:37 PM   #4
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Re: Never saw this comming

MsNik, quick question: I see where you always use the term 'Cspine'. Does that mean the cervical spine? If so does that mean it's an MRI of the cervical part of the spine and brain that are used in the diagnosis of MS and not the whole spine..thoracic, and lumbar also? Thank you.

 
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Old 07-02-2012, 09:48 PM   #5
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Re: Never saw this comming

Preserved,
Sorry for using the shorter version. Yes, Cspine is cervical spine as opposed to Lspine (lumbar) or Tspine (thoracic). A standard MS workup includes a MRI of the brain and Cervical (Cspine). This is where 99% of lesions hide out...however, in some cases, lesions WILL appear lower, in the lumbar or thoracic areas....in cases where the doctor isnt finding anything higher, they may check to see if things appear lower, however they will always start high and work down.

Very few patients have lower lesions and those who do usually tend to have a more progressive form of the disease.

I have over 50 lesions on my brain, none on my lower spine (although I did have an MRI today so if that changes, ill let you know!) and its not the number of lesions which determine disability or problems, but the placement of them. Im very fortunate, mine are all in areas of my brain which affect my hands/ fingers, but not my gait so much. And I happen to be fortunate because I believe I had MS much longer than I had symtoms, and apparently, my brain rewired itself to use other signals...my MS didnt stop me from accomplishing anything I set out to do!

Hope this helps...
Nikki
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Old 07-03-2012, 10:06 AM   #6
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Re: Never saw this comming

Thank you for the incouragement. I do believe the the X-ray and blood test are to rule out other diagnosis. The X-ray was for cervical and lumbar because of pain in lower back and muscle spasm around neck. After reading many post I am greatfull that my PC took me seriously and is aggressively looking to find answers. So far everything has come out neg. I was told I had a cataract in Nov. my PC says he doesn't think so, optic neuritis more likely. Have appt. with othomologist on Thursday and can not get an appt with Neurologist until Oct. 2. grrrr!
Questions: 1. Can an othomologist tell if you have had optic neuritis 7 months later? Does it scar?
2. What' s my next step, will my PC order a MRI or will I have to wait until my neuro. consult in Oct.
Thanks for any info.

 
Old 07-03-2012, 10:26 AM   #7
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Re: Never saw this comming

Often times an X-ray and CT are used to confirm if the problem is neurogenic and not physical. ON can certainly be a possibility and ON can be a separate problem than MS or it can eventually lead to MS.

If there are concerns, there should be no reason your PC cannot order the MRI. Ask for an MRI with and without contrast of your head and c-spine. If ON is the primary possibility, I would encourage you to seek the counsel of a neuro-ophthalmologist. If you have ON, the ophthalmologist should be able to tell you even 7 months later. Most people who have had ON will have some kind of residual damage and this will be seen.


If you are having tests run, typically you would have:
1. A routine eye exam. Your eye doctor will check your vision and your ability to perceive different colors.

2. Ophthalmoscopy. A bright light is shined into your eye and the doctor examines the structures at the back of your eye to evaluate the optic disk, which is the area where the optic nerve enters the retina in your eye. For about 1/3rd of people with ON the optic disk becomes swollen.

3. Pupillary light reaction test. Your doctor may move a flashlight in front of your eyes to see how your pupils respond when they're exposed to bright light. Pupils in eyes affected by optic neuritis don't constrict as much as those in healthy eyes do when stimulated by light. If you have been using eye drops, let your doctor know because this can affect some results.

Other tests you may have include:

4. VEP test (Visual evoked potentials test). To perform this test, you sit before a screen on which an alternating checkerboard pattern is displayed. Attached to your head are wires with small patches to record your brain's responses to the visual stimuli. This type of test is able to detect the slowing of electrical conduction resulting from damaged areas on the optic nerve. The VEP is quite sensitive and can determine the slightest of changes. The test is non-invasive. The worst part is not shampooing the day before the test! My last VEP showed there were problems and it led to discovering active lesions in my thoracic spine.

5. Magnetic resonance imaging (MRI) scan. You should have the MRI with and without contrast. The neuro-ophthalmologist can order the MRI.

6. Blood tests. A blood test is available to check for antibodies for neuromyelitis optica. An erythrocyte sedimentation rate (“ESR”) blood test is used to detect inflammation occurring in your body. This test may help determine whether optic neuritis is caused by inflamed cranial arteries (cranial arteritis). Blood tests are also used to rule out diabetes.

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MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
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