I have no idea what I'm doing...

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I have no idea what I'm doing...

Postby janekathleen » Sun Nov 20, 2011 10:21 am

I'm 36. A few months ago my left hand went numb. I went to my doc and he asked me if I had fallen recently. I told him that, yes, I fell down some stairs a few months prior. Under the assumption that I had a pinched nerve, he had me take some steroids and do physical therapy.

The numbness was continually improving, until one morning about six weeks ago, I woke up and it was completely numb again. I also noticed that when I bend my head down, a tingling sensation flares down the left side of my body. This time my doc sent me to an orthopedic surgeon who then sent me to a neurologist who did a nerve conduction test of my arm and found all was well in my arm. He decided I should have an MRI of my c-spine.

In the course of the month or so that it took to make my way to the neurologist, schedule the MRI, and make an appointment to review the results, my hand numbness has almost completely gone away. However, the tingling that occurs when I bend my head down is still very present. I had been thinking that whatever happened when I fell was healing and I would be back to normal within a few weeks.

When I went in to see the neuro to review the MRI, he said that my vertebrae are all lined up nicely, so the fall didn't cause my problems. There is a lesion on my spine, however, that he describes as suspicious of MS. He is sending me in for an MRI of the rest of my spine and of my brain. After the appointment I remembered that about six years ago I had a three-week episode of facial numbness. I hadn't thought to tell the doctors about that before, so I guess I have more news the next time I go in.

I'm scared shitless. I'm engaged and my fiance is being very supportive. I've always been a go-getter, and I'm in the middle of applying to grad school. I know that even if I have MS, I can deal with it and it won't stop me from doing what I want to do. But for some reason this is still freaking me out.
Last edited by janekathleen on Sun Nov 20, 2011 11:38 am, edited 1 time in total.
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Re: I have no idea what I'm doing...

Postby lyndacarol » Sun Nov 20, 2011 11:19 am

Welcome, janekathleen. I think you will find this community supportive and useful. We all understand, all too well, the emotions that you have when facing this situation. We are unique individuals with different experiences and different ideas on this MS disease.

We will try to answer your questions and offer suggestions when you ask. For the moment, take a deep breath, count your blessings including a supportive fiancé, assemble a medical team of doctors (GP, neurologist, etc.) you trust and can work with. Start your own file of copies of medical test results and read, read, read.

We welcome you and your contributions to this group. All the best to you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: I have no idea what I'm doing...

Postby janekathleen » Sun Nov 20, 2011 2:02 pm

Thanks, lyndacarol :smile:

I've been wondering whether I should be avoiding bending my neck down. Does anyone know if it could make things worse, or is it just an annoyance I should get used to dealing with?
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Re: I have no idea what I'm doing...

Postby jimmylegs » Sun Nov 20, 2011 3:04 pm

hi JK,

the tingling when you bend your neck is probably what is called l'hermitte's sign. l'hermitte's is a clinical sign of an active cervical spinal cord lesion. not sure if bending makes it worse or not, and it should only trouble you for as long as the flare-up lasts.

if you want some action items re nutrition you can start reading in my signature links. you sound like a fighter, good for you, and welcome to TIMS!
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: I have no idea what I'm doing...

Postby euphoniaa » Sun Nov 20, 2011 6:26 pm

lyndacarol wrote:
....We are unique individuals with different experiences and different ideas on this MS disease.

For the moment, take a deep breath, count your blessings including a supportive fiancé, assemble a medical team of doctors (GP, neurologist, etc.) you trust and can work with. Start your own file of copies of medical test results and read, read, read.


Hi Janekathleen, and welcome! I completely agree with Lyndacarol's entire post and advice above. She's entirely correct that we're all unique, but that also means you'll find a variety of options that may fit right into your situation. I always suggest that the first thing to do is to optimize your health in general with diet & exercise - it can only help. :smile:

One quick point I wanted to make is that the tingle when you bend your neck down is almost certainly Lhermitte's, and may be due to the lesion on your spine. But like every other symptom, Lhermitte's is NOT exclusive to MS.

I had a severe case of it for at least several weeks about 25 + years ago. Since it was so obvious to me it was a spinal issue, though, I assumed it was due to childhood whiplash incidents, and didn't even go to a doctor. Lhermitte's is the reason I developed my diet/exercise routine, paying special attention to my neck, lost weight, and it worked (or I assumed it did). It soon calmed down to a mild twinge only when I bent my neck WAY down. It has continued gradually going away for the last 25 years, until in the last year I've stopped noticing it at all.

But I have no idea where mine comes from. My C-Spine MRI 8 yrs ago showed NO spinal lesions, but only cervical spondylosis, which can also cause Lhermitte's sign.

Here's a quick Wikipedia definition:
Lhermitte's sign, sometimes called the Barber Chair phenomenon, is an electrical sensation that runs down the back and into the limbs. In many patients, it is elicited by bending the head forward. It can also be evoked when a practitioner pounds on the posterior cervical spine while the neck is flexed; this is caused by involvement of the posterior columns. Lhermitte's sign is named for Jacques Jean Lhermitte, a French neurologist and neuropsychiatrist. Thus it is incorrect to spell the term as "L'hermitte's sign".

Associated conditions
The sign suggests a lesion of the dorsal columns of the cervical cord or of the caudal medulla. Although often considered a classic finding in multiple sclerosis, it can be caused by a number of conditions, including transverse myelitis, Behçet's disease, trauma, radiation myelopathy, vitamin B12 deficiency (subacute combined degeneration), and compression of the spinal cord in the neck from any cause such as cervical spondylosis, disc herniation, tumor, and Arnold-Chiari malformation. Lhermitte's Sign may also appear during or following high dose chemotherapy.


Good luck to you, and I'll just leave you with this - I've apparently had MS for at least 38 years, and I'm still doing okay, even working full-time. Even though my body continually does weird stuff, I've somehow managed to adapt to it year after year. MS is just there and I deal with it. :smile:
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: I have no idea what I'm doing...

Postby janekathleen » Mon Nov 21, 2011 8:12 pm

Thank, you guys :-D Euphoniaa, it's very heartening to hear you describe your experience. I appreciate the responses.

I can't wait to get in for my next MRI now, but I keep reading about people that get MRIs and don't get a diagnosis in spite of the presence of lesions. I've also read that the best thing a person with MS can do is get treatment as early as possible. I hope I ask the right questions next time I see my neuro (which will be to review the MRI). I'm going to take my fiance with me, so hopefully that helps.
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Re: I have no idea what I'm doing...

Postby lyndacarol » Mon Nov 21, 2011 9:02 pm

janekathleen – When you wrote,
I've also read that the best thing a person with MS can do is get treatment as early as possible.
I am sure you had been reading in an MS Society publication; that group is a STRONG proponent of the DMDs (Disease-Modifying Drugs). You will find a few of us here who used these drugs for many years and whose condition continued to deteriorate in spite of them. Consequently, I chose to discontinue them long ago. MY personal opinion is that effective treatment can only be developed after researchers understand the disease and learn the cause of it (and the cause is still unknown!).

At the present time, I think diet and exercise are the most beneficial treatment. I am especially impressed by the story of Dr. Terry Wahls (http://www.TerryWahls.org).

But each person must determine his own course of action after reading information and working with physicians. I'm glad to hear that your fiancé will be with you for the appointment with the neurologist; we all hear and remember things selectively – your fiancé will be great help in absorbing the details.
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Re: I have no idea what I'm doing...

Postby civickiller » Wed Nov 23, 2011 1:45 am

i suggest coming by the chiropractic treatment board

i think a visit to a upper cervical care Dr. to get tested if see if UCC should be done
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Re: I have no idea what I'm doing...

Postby janekathleen » Sat Nov 26, 2011 8:01 pm

I’ve been reading peer-reviewed scientific journals, lyndacarol, not MS Society publications. It appears that since at least 2002, The American Academy of Neurology has recommended DMDs for RRMS based upon research that shows that they reduce the frequency and severity of attacks (for some people- I am sorry you weren’t one of them). If I am diagnosed I plan to come from multiple angles (drugs, diet, exercise, and adaptation where needed). Thank you for the link and the kind words. I imagine you know how much that means to me right now. I appreciate your time and concern.

Did I say I have no idea what I’m doing? A few days of reading seem to have given me some direction at least. I feel so lucky to have health insurance right now. My heart goes out to those suffering without access to neurologists, MRIs and treatment.

@civickiller Why would you recommend seeing a UCC? Is there something in my original post that makes you say that?
Last edited by janekathleen on Sat Nov 26, 2011 8:16 pm, edited 2 times in total.
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Re: I have no idea what I'm doing...

Postby janekathleen » Sat Nov 26, 2011 8:04 pm

I've already been exercising more and eating better since my last visit to the neuro. Funny how that works, isn't it?
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