Trying to rule out MS

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mbw1103
Regular Member


Date Joined Apr 2009
Total Posts : 71
   Posted 7/21/2013 10:16 PM (GMT -6)   

Hi...I'm new to the MS forum, but have been on others...I've been relatively healthy over the last year or two(except for the last 3 months), so I've been absent from the forum altogether. Long story short, I have symptoms that can be related to MS as well as other conditions. Even though I don't have a typical MS presentation, I have a host of other autoimmune conditions and doctors are trying to rule out MS. So far no test confirms MS, but none are clean either (could be MS, could be something else causing abnormal results). In all honesty, I'm more concerned about figuring out why my primary symptom (peripheral neuropathy) is happening so that I can treat that, but none of my doctors will address the neuropathy until they've definitely ruled out MS (or can confirm it). I've been trying not to read too much about MS, but after 3 months I'm starting to get frustrated and am looking for any advice/similar experiences.

 

The long version....

I originally started seeing doctors in late April because I was getting tingling in my left thumb and left big toe. I initially thought it was related to a back injury because the symptoms started the day after I pulled my back, so I started with an orthopedic surgeon and started with MRIs of the lumbar and cervical region (no contrast) to rule out a herniation (which they did). By the time I had the MRIs a few days later, the tingling was spreading up my left arm and left leg. 95% of the time it was on my left side, but I would occasionally get something on my right side (either arm or leg, but usually not both at the same time).

 

Next I saw a pain specialist who, in addition to starting me on Gralise (an extended form of Gabapentin) for the neuropathy, conducted EMGs and nerve conduction tests on my upper and lower extremities. The tests on my legs confirmed neuropathy in the left leg, and to my surprise, in the right leg too (actually more pronounced in the right leg). The test indicated that the neuropathy was suggestive of a demyelinating process. The tests on my arms were done about a week later, at which point i was having more consistent tingling/numbness in both hands/arms and both legs/feet. I was also getting electric shock like feelings in both legs and occasionally an arm. I also had one episode of tingling around my left eye. The tests on my arms did not show neuropathy, but did show a pinched nerve on the left side of my neck. The pain specialist said that the pinched nerve would explain left hand/arm tingling, but nothing else.

 

In between the two EMG/nerve conduction tests, I saw my rheumatologist, who did not think that the symptoms were related to anything autoimmune. She ran some blood work at the pain specialist's request, which ruled out lyme disease, showed normal B12 levels, but did show low vitamin D, an elevated CRP and high C4 compliment. As a side note, my stomach has been acting up and my GI and I are trying to decide if it's a return of Crohn's or IBS (both of which have been in remission for the last 18 months....if it's Crohn's it could explain the CRP and C4 compliment, as well as later non-specific test results).

 

Somewhere in there, I started seeing a local neurologist. He repeated the sensory exam, which showed no ankle reflexes and decreased cold sensation in the lower part of both shins. He didn't think I had MS, but given my history of autoimmune conditions, ordered an MRI with contrast of the brain and cervical spine. The cervical spine was denied by insurance because I had just had one without contrast when trying to rule out a herniation. The brain MRI showed a faint inactive lesion. Even if the lesion was active, it would explain absolutely nothing since my outward symptoms are more on my left side and the lesion is on the left side too! (As a side note, I had brain MRIs done in 2011 and 2012 for a different reason (probable pituitary adenoma) and the 2012 MRI showed the inactive lesion as well...they did not see it on the 2011 MRI but these MRIs were a different sequence of images so there's nothing conclusive as to whether or not i had the lesion in 2011).

Based on the MRI results, the local neurologist ordered a lumbar puncture. The lumbar puncture showed high levels for: MS CNS Synthesis Rate, MS IGG Index, MS IGG Total CSF, MS IGG (LOC), MS IGM CSF, and MS IGM (LOC). Based on the MRI and Lumbar puncture results, he referred me to the NYU MS Center. By the way, I'm not familiar with these results - the local neurologist described them as non-specific signs of an inflammatory response; the NYU neurologist described them as suggestive of a demyelinating process, such as MS (but still not confirming MS).

 

I saw a neurologist at the NYU MS Center last week, who did her own history, sensory exams and looked at past test results. Her sensory exams showed the same things (plus now I don't feel a sharp prick on my lower arms and legs). She came to the same exact conclusions as everyone else...it doesn't look/sound like MS, but she can't rule out MS either ....ugh!! At some point during the exam she mentioned possibly referring me to a peripheral neuropathy specialist...at the end of the exam, I asked if I could have that referral and she said "let's wait for more test results"...double ugh!! (If I knew how to find a peripheral neuropathy specialist I would just make an appointment, but I don't know where to begin looking and don't have the time to start a massive search.)

 

Next up - I'm getting a repeat brain MRI with a higher power magnet, as well as a cervical and thoracic MRI (all with and without contrast). The tests are being done on Thursday, but I won't see the doctor again for 3.5 weeks. From what the NYU neurologist told me, this set of MRIs should allow for a diagnosis one way or the other, but this waiting is killing me (not so much because I'm on edge about MS, but because I want to get to the bottom of the neuropathy).

 

At this point, the neuropathy is moderately controlled by the Gralise. It's still predominately in my left arm/hand and left leg/foot, with some presentation in my right arm/hand and leg/foot. I've had 3-4 episodes of tingling around my left eye, but not real change in vision. I still have some symptoms, but only rarely need percocet (at my worst I was taking 3-4 percocet a night just to get some sleep). I would like to treat the cause rather than the symptoms if possible, but it's beyond me I can't get anyone to look for the cause of the neuropathy at the same time that they try to rule out/in MS.

 

If you made it this far, thanks for reading all the way through!

 

Melissa

 


opugirl
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Date Joined Nov 2012
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   Posted 7/31/2013 1:05 PM (GMT -6)   
I thought I had MS but it ended up being Lyme disease. Something to check in to. Luckily all of my neurological symptoms went away after ~ month of antibiotics only so I was able to rule out almost everything and conclude that it was infectious. Worth checking into.
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mbw1103
Regular Member


Date Joined Apr 2009
Total Posts : 71
   Posted 7/31/2013 1:11 PM (GMT -6)   
Thanks Opugirl.  The doctors already ruled out lyme disease during an early round of bloodwork. 

sueg
Veteran Member


Date Joined Aug 2013
Total Posts : 718
   Posted 9/28/2013 1:25 PM (GMT -6)   
I have heard that the tests for Lyme disease are very inaccurate. So you might want to ask your doctors about that.

And since your post is from 2 months ago I am wondering if you have any answers yet on the MS question?

mbw1103
Regular Member


Date Joined Apr 2009
Total Posts : 71
   Posted 9/28/2013 1:48 PM (GMT -6)   
Thanks - I'll ask again about Lyme disease when it see the next neurologist. Since my last post I got the results of the last MRIs, but otherwise I'm not really any further along. The cervical and thoracic MRIs we're clean, but they found more inactive lesions on the brain. Since the scan wasn't clean, but there are only 3 lesions and they're all inactive, the doctor is still saying "I don't think you have MS, but we can't rule it out." The good(?) news is that my other autoimmune conditions (crohn's and some type of arthritis) are officially out if remission, so that could explain the inflammation on the lumbar puncture. Bottom line is that the doctor ordered a repeat MRI for 6 months to see if there are any changes - hopefully by February I can put this behind me. The actual good news is that she finally gave me the name of a neurologist that specializes in neuropathy - I see him in about 1.5 weeks and hopefully can get some answers re: the neuropathy.
34 - Diagnosed with Crohn's in Nov. '05
Current Meds: Apriso, Canasa, Methotrexate, Pamine Forte, Aciphex, Domperidone, Folic Acid, Restasis, Zofran, Zyrtec, Zantac, Align, Calcium, Vitamin D, Centrum, Digestive Enzymes, Thera-tears Omega 3 Supplement
Gluten free since Aug. '03

mbw1103
Regular Member


Date Joined Apr 2009
Total Posts : 71
   Posted 9/28/2013 1:49 PM (GMT -6)   
Thanks - I'll ask again about Lyme disease when it see the next neurologist. Since my last post I got the results of the last MRIs, but otherwise I'm not really any further along. The cervical and thoracic MRIs we're clean, but they found more inactive lesions on the brain. Since the scan wasn't clean, but there are only 3 lesions and they're all inactive, the doctor is still saying "I don't think you have MS, but we can't rule it out." The good(?) news is that my other autoimmune conditions (crohn's and some type of arthritis) are officially out if remission, so that could explain the inflammation on the lumbar puncture. Bottom line is that the doctor ordered a repeat MRI for 6 months to see if there are any changes - hopefully by February I can put this behind me. The actual good news is that she finally gave me the name of a neurologist that specializes in neuropathy - I see him in about 1.5 weeks and hopefully can get some answers re: the neuropathy.
34 - Diagnosed with Crohn's in Nov. '05
Current Meds: Apriso, Canasa, Methotrexate, Pamine Forte, Aciphex, Domperidone, Folic Acid, Restasis, Zofran, Zyrtec, Zantac, Align, Calcium, Vitamin D, Centrum, Digestive Enzymes, Thera-tears Omega 3 Supplement
Gluten free since Aug. '03

sueg
Veteran Member


Date Joined Aug 2013
Total Posts : 718
   Posted 10/3/2013 12:47 AM (GMT -6)   
I am new to this-but does it usually take a few MRI's to have a dx? or more lesions? I am just curious as I will see a Neuro next week and talk to him about tests and such.

And I wonder-- if you have one Autoimmune Disease are you prone to get more? (I have SLE, but it is in remission)

mbw1103
Regular Member


Date Joined Apr 2009
Total Posts : 71
   Posted 10/3/2013 6:53 AM (GMT -6)   
Others will know better, but from what both neurologists told me, MS is usually evident from 1 MRI because there are typically many active lesions. My lesions are inactive so if I have MS it's in remission and it's pure luck that they found it. The only reason I'm pursuing it is (a) no one would look for causes of neuropathy until MS was ruled out/in and (b) if I did have it I could start mecications now to keep it in remission.

Regarding clustering of autoimmune conditions - the way I understand it, having one autoimmune condition doesn't make you more likely to develop another, but once they've started clustering (i.e., 2+ autoimmune diagnoses), you're more likely (but not guaranteed) to develop additional. At this point I have 5 confirmed conditions, 2 more probable and 2 more that doctors keep an eye on since I show some but not all symptoms - there is definite clustering in my case.

I hope your appointment goes well!
34 - Diagnosed with Crohn's in Nov. '05
Current Meds: Apriso, Canasa, Methotrexate, Pamine Forte, Aciphex, Domperidone, Folic Acid, Restasis, Zofran, Zyrtec, Zantac, Align, Calcium, Vitamin D, Centrum, Digestive Enzymes, Thera-tears Omega 3 Supplement
Gluten free since Aug. '03

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 10/3/2013 8:43 AM (GMT -6)   
It took just one set of MRIs for me. I had lesions on my brain and spine.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.
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