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Old 03-09-2014, 12:54 AM #1
Yolandi Yolandi is offline
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Frown No diagnosis yet

After going through extensive testing (MRI, EEG, EMG, LP and blood tests) many of my results were given and I saw my neurologist on Friday again. She said to me a substance were found in my spinal fluid, called oligoclonal bands,
that are found in Multiple Sclerosis, but I don’t fit the profile for Multiple Sclerosis.
The other findings were a single circumscribed T2 and T2 flair hyperintense lesion in the posterior aspect of the basal ganglia on the left and prominence of the nasal turbinates suggesting an underlying rhinitis, that were noted from the MRI. And from the blood test the following: Leucocyte count 16.45, neutrophils 77.1% 12.67 and monocytes 6.8% 1.14.
She now wants to have a brain angiogram performed to test for cerebral vasculitis, but my medical funds were exhausted by the MRI and my neurologist is trying to get this procedure approved or I must wait till April to pay for the procedure myself.
I guess slowly, but surely we are getting closer to a diagnosis. I just wish the answers would come a bit faster.
From my own studies performed, my bet is on Cerebral Vasculitis which were initially caused by the rhinitis and thickening of the ethmoid sinuses and resulted in Wegener’s granulomatosis (why the blood results above were out of range), which in return explains the Thalamic stroke I had in 2004 and the hyperintense lesion on my left basal ganglia.
I am anyway going to present this to my neurologist and hear what her theory on this is
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Old 03-09-2014, 04:59 AM #2
LostCause LostCause is offline
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Default No diagnosis, but your symptoms are...

Hello fellow thalamic stroke sufferer. I had mine in 2007 and it affected my right side. My BP was sky high on ER admission and I went on lisinopril (synthetic snake venom), amlodipine and atenolol to contol the high BP. The side effects from the BP meds ruined my health and I am trying to recover

You didn't mention your symptoms at the root of all the neurological tests. Poor memory, balance issues, neuropathic pain, clumsiness??? The possibilities are almost endless. I would guess muscle stiffness and numbness.

My only caveat re your upcoming angiogram are the contrasting agents used. If you have chemical sensitivities be very cautious.

By the way most neurologists just have no clue re thalamic strokes.
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Old 03-09-2014, 06:27 AM #3
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Hello Yolandi,

Quote:
After going through extensive testing (MRI, EEG, EMG, LP and blood tests) many of my results were given and I saw my neurologist on Friday again. She said to me a substance were found in my spinal fluid, called oligoclonal bands
Quote:
that are found in Multiple Sclerosis, but I don’t fit the profile for Multiple Sclerosis
Do you know what your Neurologist meant when he said you do not fit the profile for Multiple Sclerosis (MS)?

Oligoclonal bands (o-bands) ---

Quote:
CSF oligoclonal banding is a test to look for inflammation-related proteins in the cerebrospinal fluid (CSF), the clear fluid that flows in the space surrounding the spinal cord and brain.

Oligoclonal bands are proteins called immunoglobulins, which suggest inflammation of the central nervous system. The presence of oligoclonal bands may be a sign of multiple sclerosis.
http://www.nlm.nih.gov/medlineplus/e...cle/003631.htm

When I was diagnosed with MS I had 5 o-bands, a clear MRI, could not pass a Neurological exam and was having a severe exacerbation (relapse, attack, flare-up). There was and is a criteria for diagnosing MS (McDonald Criteria) but I did not fit the criteria at the time (Poser Criteria) of diagnosis. I did go on to meet criteria one year later with a second exacerbation.

You might want to post over on the Multiple Sclerosis Forum and as questions there
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Old 03-09-2014, 12:13 PM #4
Yolandi Yolandi is offline
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Originally Posted by LostCause View Post
Hello fellow thalamic stroke sufferer. I had mine in 2007 and it affected my right side. My BP was sky high on ER admission and I went on lisinopril (synthetic snake venom), amlodipine and atenolol to contol the high BP. The side effects from the BP meds ruined my health and I am trying to recover

You didn't mention your symptoms at the root of all the neurological tests. Poor memory, balance issues, neuropathic pain, clumsiness??? The possibilities are almost endless. I would guess muscle stiffness and numbness.

My only caveat re your upcoming angiogram are the contrasting agents used. If you have chemical sensitivities be very cautious.

By the way most neurologists just have no clue re thalamic strokes.
Hello LostCause,

Yip, I have all those symptoms you mention above and I can add tremors and emotional difficulty with flare-ups from time to time, every about 2 years, on which I only respond positive to high dosages of Solu-Medrol IV of 1,000mg per day for at least 3 days.

For the angiogram and contrasting agents, my kidney function were already tested fortunately. Thank you for the heads up. I really appreciate it
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Old 03-09-2014, 12:19 PM #5
Yolandi Yolandi is offline
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Originally Posted by Snoopy View Post
Hello Yolandi,





Do you know what your Neurologist meant when he said you do not fit the profile for Multiple Sclerosis (MS)?

Oligoclonal bands (o-bands) ---


http://www.nlm.nih.gov/medlineplus/e...cle/003631.htm

When I was diagnosed with MS I had 5 o-bands, a clear MRI, could not pass a Neurological exam and was having a severe exacerbation (relapse, attack, flare-up). There was and is a criteria for diagnosing MS (McDonald Criteria) but I did not fit the criteria at the time (Poser Criteria) of diagnosis. I did go on to meet criteria one year later with a second exacerbation.

You might want to post over on the Multiple Sclerosis Forum and as questions there
Thank you Snoopy,

I truely appreciate your input on this.

Have you developed any lesions over time? I still have only this one single lesion that was detected for the first time October 2010 from an MRI. I don't really know what my neurologist meant when she said I don't fit the profile. Does that mean the possibility of MS is there for me and that the Vasculitis can be ruled out?

With my last flare-up I was also administered only 1,250mg of Solu-Medrol, instead of 3,000mg I received December 2012 and the tremors and burning muscle sensations are still there.

What I haven't mentioned above, is the EMC detected nerve damage in my right leg from the knee downwards also.

Does this sound at all familiar to you?

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Old 03-09-2014, 01:14 PM #6
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Hi Yolandi,

Quote:
Does that mean the possibility of MS is there for me
Quote:
and that the Vasculitis can be ruled out?
Unprofessionally, I would think both would still be on the table as you are still going through the diagnostic process and if I understand correctly, nothing has been ruled in or out at this time.

Quote:
What I haven't mentioned above, is the EMC detected nerve damage in my right leg from the knee downwards also.
Did you meant to type EMG? If so and if the EMG came back abnormal that would point away from MS. A EMG is not a test taken into consideration for MS. MS is a disease of the Central Nervous System (CNS) and the EMG is a test which indicates damage outside the CNS.

Quote:
Have you developed any lesions over time?
Yes. If a person has MS it will show, on MRI, sooner or later

I wish you all the best in your diagnostic journey and hope whatever the outcome, it is easily treated or fixed
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