Waiting For Neurologist Appt

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Hope1
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Re: Waiting For Neurologist Appt

Post by Hope1 » Sat Oct 14, 2017 5:30 pm

Hello again,
So, according to resident neurologist, MRI of spine looks fine, brain shows three lesions in the white matter that are not active. The doctor said that those lesions in of themselves are not conclusive of MS but he does not rule out it could be the diagnosis in the end.

They are discussing whether I will stay at hospital for more testing or be treated as an outpatient.

I feel some hope and will be tackling the nutrition but of course, I am still unwell so I am not sure what to think yet.

Hope1
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Joined: Sat Oct 14, 2017 1:34 am

Re: Waiting For Neurologist Appt

Post by Hope1 » Wed Oct 18, 2017 9:30 am

Dear all,
Thank you for your support during this difficult time. In the end, I was admitted to the hospital, and after ruling out heart and lung problems, I had both an MRI and a Spinal Tap performed and I stayed at the hospital 2 days, which actually really helped with my fatigue. I will get the results of the LP on November 1st when I see a Neurologist. The MRI showed no lesions on the spine and three flares in the brain. Those flare are however not active as of right now. They were also apparently not in a region where they would typically be in MS. The doctors are also looking into Celiac disease, Lyme disease and a few autoimmune disorders. There is some suspicion that the Esophageal Spasms could be due to GERD. Although I try my best to eat healthy etc, independently of what the diagnosis is, I am following up with a dietitian and getting back to Yoga.
I am happy we are looking deeper into the situation and will update with my final diagnosis. In the meantime, if there is any way I can give back to this forum for helping me, I would like to do that.

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jimmylegs
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Re: Waiting For Neurologist Appt

Post by jimmylegs » Wed Oct 18, 2017 10:53 am

glad to hear you have some solid answers. stay in touch and let us know how you get on :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Hope1
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Posts: 14
Joined: Sat Oct 14, 2017 1:34 am

Re: Waiting For Neurologist Appt

Post by Hope1 » Wed Oct 18, 2017 1:29 pm

I most definitely will. Best of luck to all of you in the meantime.

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jimmylegs
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Re: Waiting For Neurologist Appt

Post by jimmylegs » Wed Oct 18, 2017 1:53 pm

do me a fave if you can, and have your docs run some serum nutrient tests - serum b12, d3, ferritin, magnesium, zinc, and copper would all be handy things to know! ;)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Hope1
Getting to Know You...
Posts: 14
Joined: Sat Oct 14, 2017 1:34 am

Re: Waiting For Neurologist Appt

Post by Hope1 » Wed Oct 18, 2017 2:10 pm

Hi Jimmylegs,

I checked the online system and have found the following value for B12:
VITAMIN B12 413 pg/mL 180-933 pg/mL

They ran more blood tests while I was at the hospital so maybe they will show up on the system eventually. Otherwise, I will try my best to get those other values.

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jimmylegs
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Re: Waiting For Neurologist Appt

Post by jimmylegs » Wed Oct 18, 2017 3:02 pm

oh nice find.

413 is not awful (while 181 is pretty terrible but still 'normal' - typical lol) but ideally you'll want to keep your serum b12 level above 500 if you can.

if you don't have a daily high quality multivit/min in your routine, that could protentially nudge your b12 level a notch higher.

i'll look forward to other results as they become available :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Hope1
Getting to Know You...
Posts: 14
Joined: Sat Oct 14, 2017 1:34 am

Re: Waiting For Neurologist Appt

Post by Hope1 » Wed Oct 25, 2017 7:21 am

Hello again!
I still do not have further tests on vitamins, zinc and magnesium but the following results came in today:
CEREBRAL SPINAL ALB 35.3 mg/dL 0.0-35.0 mg/dL
CEREBRAL SPINAL IgG 3.6 mg/dL 0.0-3.4 mg/dL
CSF TOTAL PROTEIN 55 mg/dL 15-45 mg/dL
% of Total 7 % 4-18 %
CSFGA 0.10 RATIO 0.02-0.45 RATIO

From what I read, am I interpreting this correctly? This indicates an inflammatory process in the CNS but the fact that the ratios are normal would be unusual in MS?
Out of four blood tests, glucose came out high in one (value of 106) the others were all in the 80s and 90s.
Lyme came back negative and did syphilis. I almost feel like these could also be signs of diabetes, but the glucose is not that bad.
I did show some signs of deterioration in my spine at the cervical and lumbar area and I do have discomfort there, although no strong pain. They interpreted the results as insignificant but maybe they are enough to cause the inflammation? I have been taking medicine against GERD, and that has taken away my esophageal spasms, so the question is, why is the acid traveling up?

My appointment is still on November 1st.

Hope1
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Posts: 14
Joined: Sat Oct 14, 2017 1:34 am

Re: Waiting For Neurologist Appt

Post by Hope1 » Wed Oct 25, 2017 8:47 am

Perhaps CIDP?

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jimmylegs
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Re: Waiting For Neurologist Appt

Post by jimmylegs » Wed Oct 25, 2017 9:35 am

these are not the kind of results on which i personally spend much time or energy but, you can work to control inflammatory processes if you choose.

curious: which anti GERD meds exactly?

i can't help you with diagnostics but others may chime in. as you know by this point, i orient towards health optimization and nutrition is (well, should be) the low hanging fruit in that dept. easy to find action items. has anyone referred you to a dietitian yet?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Hope1
Getting to Know You...
Posts: 14
Joined: Sat Oct 14, 2017 1:34 am

Re: Waiting For Neurologist Appt

Post by Hope1 » Wed Oct 25, 2017 10:19 am

The medication is Pantoprazole 40mg 1xday
I am working on finding a recommendation for a dietitian in my area. I do have a lead I need to look into. Slow progress...

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jimmylegs
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Re: Waiting For Neurologist Appt

Post by jimmylegs » Wed Oct 25, 2017 11:10 am

hopefully you have a good lead. i confess i am not impressed with the two for whom i have seen online profiles so far!!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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