Wondering...

New members should feel free to introduce themselves here
Post Reply
betsyRN
Newbie
Posts: 3
Joined: Fri Nov 21, 2014 11:35 am

Wondering...

Post by betsyRN » Fri Nov 21, 2014 12:00 pm

Hi All...
So I need thoughts/advice. I have had symptoms for a while that I have ignored. First one I recall is a period where I tripped over my own feet for a while. Then I started choking when I drink liquids (not eating), and only sometimes. The next symptom I noticed was speech disturbance. No so much slurring, although there are times I smash all the letters in the word together, but mostly word juxtaposition or inserting letters that don't belong. I do this daily. Several time usually. Lately, I have had a much harder time finding the right words. Like a have a big blank space in my head, like there's nothing there to draw from. I have noticed over the last year unusual sensations in my hands and feet. It seems to happen more on my left side than right. It can be pins and needles. Sudden sharp pains that quickly vanish. The feeling that the finger/toe was "asleep" and that feeling like it is waking back up. For the last couple weeks I have had all of the above in both my hands with an achy pain that doesn't seem to relent at all. What prompted a trip to the doctor was on Sep. 14th I woke up and my left thumb was numb. Around this time I was also having a period of such extreme fatigue I thought I could die. I don't nap. I would wake up on the weekends, be up for 30 minutes and go back to bed for 3-5 hours. This happened several weekends in a row. I had to drag myself through the weeks. Went to PCP, all the blood work was ordered. Everything was within normal limits except cholesterol, which was already known it wouldn't be. Vitamin D was on lower side but still WNL. I have a had a CAT scan (normal) and been referred to a neurologist. He performed an EMG. Except for it making me feel exceptionally strange during, and for about an hour after, including a minute where I thought I would toss my cookies, it was normal. I have since had an MRI without contrast. I do not have the results of the MRI yet. As I have been thinking back over the last few years I have thought of a few other oddities. I have always had GI issues as long as I can remember. About 2 years back it got really bad. I had an EGD performed and nothing could be found to explain my symptoms/pain. It lasted a few months and then suddenly went away. I have noticed over the last two years the heat, especially high humidity makes me sick. It literally turns me into another person, changes my temperment, makes me so angry because I feel so bad, makes it hard to breathe. Bu it's not just heat. I will also get so bone chillingly cold at times that it takes getting into a warm shower or bath to make me warm enough where I can sleep. The cold is in my hands, feet ,knees and sometimes nose. I have only noticed what may have been a Raynaud's episode 1-2 times. I get extremely tight muscles in my back and neck. If I take a shower after working out, or when it is really hot out, I get vertigo and see floaters. I also have issues, particularIy driving at night with judging my self, my car spatially. Happens during the day too, where I am just so "off" i just need to get home and off the road. l am a nurse. I have worked in cardiac, ICU, recovery and now a school. I am not a neuro RN or well versed. But I know how to research. I have come to this site because I believe this may be what I am looking at. I am OK with that. If it is MS, it's manageable. I know there are many things they could see on that MRI that would be much worse. I get the results this upcoming week. My question is, do this symptoms issues resonate with anyone??? What do you think? If my MRI does not show a definitive cause for what I am experiencing what do you suggest my next step be?? :?: :confused: :peace:

User avatar
lyndacarol
Family Elder
Posts: 3392
Joined: Thu Dec 22, 2005 3:00 pm
Contact:

Re: Wondering...

Post by lyndacarol » Fri Nov 21, 2014 3:24 pm

betsyRN wrote:Hi All...
So I need thoughts/advice. I have had symptoms for a while that I have ignored. First one I recall is a period where I tripped over my own feet for a while. Then I started choking when I drink liquids (not eating), and only sometimes. The next symptom I noticed was speech disturbance. No so much slurring, although there are times I smash all the letters in the word together, but mostly word juxtaposition or inserting letters that don't belong. I do this daily. Several time usually. Lately, I have had a much harder time finding the right words. Like a have a big blank space in my head, like there's nothing there to draw from. I have noticed over the last year unusual sensations in my hands and feet. It seems to happen more on my left side than right. It can be pins and needles. Sudden sharp pains that quickly vanish. The feeling that the finger/toe was "asleep" and that feeling like it is waking back up. For the last couple weeks I have had all of the above in both my hands with an achy pain that doesn't seem to relent at all. What prompted a trip to the doctor was on Sep. 14th I woke up and my left thumb was numb. Around this time I was also having a period of such extreme fatigue I thought I could die. I don't nap. I would wake up on the weekends, be up for 30 minutes and go back to bed for 3-5 hours. This happened several weekends in a row. I had to drag myself through the weeks. Went to PCP, all the blood work was ordered. Everything was within normal limits except cholesterol, which was already known it wouldn't be. Vitamin D was on lower side but still WNL. I have a had a CAT scan (normal) and been referred to a neurologist. He performed an EMG. Except for it making me feel exceptionally strange during, and for about an hour after, including a minute where I thought I would toss my cookies, it was normal. I have since had an MRI without contrast. I do not have the results of the MRI yet. As I have been thinking back over the last few years I have thought of a few other oddities. I have always had GI issues as long as I can remember. About 2 years back it got really bad. I had an EGD performed and nothing could be found to explain my symptoms/pain. It lasted a few months and then suddenly went away. I have noticed over the last two years the heat, especially high humidity makes me sick. It literally turns me into another person, changes my temperment, makes me so angry because I feel so bad, makes it hard to breathe. Bu it's not just heat. I will also get so bone chillingly cold at times that it takes getting into a warm shower or bath to make me warm enough where I can sleep. The cold is in my hands, feet ,knees and sometimes nose. I have only noticed what may have been a Raynaud's episode 1-2 times. I get extremely tight muscles in my back and neck. If I take a shower after working out, or when it is really hot out, I get vertigo and see floaters. I also have issues, particularIy driving at night with judging my self, my car spatially. Happens during the day too, where I am just so "off" i just need to get home and off the road. l am a nurse. I have worked in cardiac, ICU, recovery and now a school. I am not a neuro RN or well versed. But I know how to research. I have come to this site because I believe this may be what I am looking at. I am OK with that. If it is MS, it's manageable. I know there are many things they could see on that MRI that would be much worse. I get the results this upcoming week. My question is, do this symptoms issues resonate with anyone??? What do you think? If my MRI does not show a definitive cause for what I am experiencing what do you suggest my next step be?? :?: :confused: :peace:
Hi, betsyRN, and welcome to ThisIsMS. Since you asked, "What do you think?" I feel at liberty to offer my thoughts:

You have said, "Went to PCP, all the bloodwork was ordered. Everything was within normal limits…" I am curious to know exactly which blood tests were performed. Since all your symptoms (highlighted above) are consistent with a possible vitamin B12 deficiency, I wonder if this is been ruled out. Even an MCV value in the high end of the standard range in a CBC (complete blood count) indicates enlarged red blood cells, which can also be a sign of B12 deficiency. As you probably know, MS is a diagnosis of exclusion, made after other more likely conditions have been ruled out.

I assume that you are aware that in US labs the standard range for identifying a deficiency for the serum B12 test is considered too low by many experts.

Beyond thorough testing for a B12 deficiency (A serum B12 test alone is not adequate.), I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Dr. Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/

Youarethecure
Family Elder
Posts: 322
Joined: Mon Jan 27, 2014 8:44 pm

Re: Wondering...

Post by Youarethecure » Fri Nov 21, 2014 4:29 pm

I can relate to many of your symptoms. The speech problems you describe, the pains, numbness, etc. I am in the early stages of MS, I am only 25.

Now with that being said, there ARE MANY other reasons you can be going through this. So take what I say as almost nothing.

If you don't mind me asking, how old are you? male female? Do you have anyone in your family with MS? Lastly do you or have you smoked cigarettes?

It is good to see that even if it is MS you know it is more than manageable. The more that I learned about it the more I realized I can do this. I was diagnosed early this year and I have made the proper changes. I am on a good diet, nutrition, weight lifting (like I always have), medication and have many changes in my life and lifestyle.

I have had my fair share of flare ups and symptoms but I have built my self back up every time. I am stronger and more fit than I ever have been. I also feel better most of the time more than ever. It is crazy to say, but so far this disease has done more good for me than bad.... so far at least hehehe.

I hope the best for you !!

Chris

betsyRN
Newbie
Posts: 3
Joined: Fri Nov 21, 2014 11:35 am

Re: Wondering...

Post by betsyRN » Sat Nov 22, 2014 5:16 am

Hi...thank you for answering. Yes B12 was checked and I was in the very upper range of the parameters. I am female...40...no family history that I am aware of...but I so not know my fathers family so it could be. I have never smoked....but my mom has my whole life. Some of these symptoms go back years. I ignored them...or just started considerring them possibly linked recently. And yes I realize a diagnosis of exclusion. I previously has tested negative for ANA but with a high C reactive protein.

User avatar
lyndacarol
Family Elder
Posts: 3392
Joined: Thu Dec 22, 2005 3:00 pm
Contact:

Re: Wondering...

Post by lyndacarol » Sat Nov 22, 2014 9:06 am

betsyRN wrote:Yes B12 was checked and I was in the very upper range of the parameters. I am female...40...no family history that I am aware of..
I'm glad to hear the serum B12 was checked. My level also appeared to be high – I believe that my high folic acid intake masked a deficiency, a therapeutic trial of methylcobalamin injections has begun to improve some of my symptoms. (Cyanocobalamin injections did nothing for me.)

From the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O.: http://b12awareness.org/could-it-be-b12 ... diagnoses/

On page 11:
"There is much controversy as to what constitutes a normal result for this test [serum vitamin B12 test]. Because of this controversy, this test is often used in conjunction with other markers of B12 deficiency (MMA, Hcy, and more recently the HoloTc).

… We believe that the "normal" serum B12 threshold needs to be raised from 200 pg/mL to at least 450 pg/mL because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/mL.

At this time, we believe normal serum B12 levels should be greater than 550 pg/mL.…

We commonly see patients with clinical signs of B12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the gray zone [between 200 pg/mL and 450 pg/mL]. This error results in delayed diagnosis and an increased incidence of injury."
These authors even suggest that the B12 level should be at 1000 pg/mL or more if a patient presents with neurologic symptoms. Compare your B12 test results to those recommended by the authors. (Human babies and mammals are born with levels of 2000 pg/mL, which is reduced throughout life.)

By the way, the serum B12 test alone is not adequate to identify a deficiency. Thorough screening should include a serum folate test, a serum homocysteine test, and a serum (or urinary) methylmalonic acid test. (Some experts even recommend the HoloTc test, as well.)

betsyRN
Newbie
Posts: 3
Joined: Fri Nov 21, 2014 11:35 am

Re: Wondering...

Post by betsyRN » Thu Nov 27, 2014 6:48 pm

Ok...so first MRI back. States "minimal" white matter abnormalities...periventricular and subcritical signals T2 Flair..."possibly demylenation disease"...neurologist states only minimal doesn't think its MS...yet gave that diagnosis so he could order cervical and spine MRI. For those of you this applies to...what symptoms did you have if you were diagnosed with mostly spinal lesions??

Post Reply

Return to “Introductions”