This Is MS Multiple Sclerosis Knowledge & Support Community

Hi everyone,

I just got off the phone with my ortho and I have to tell you, I'm scared. I've known for about a week that MS could be one possible reason for my symptoms, but put it out of my mind -- no way I have that, right?

Sorry if this is disjointed... I'm just nervous. Let me back up.

In late July, I started feeling numbness in two of my fingers of my left hand and my arm would randomly fall asleep about once a day. A few weeks after that started, I came down with vertigo-like symptoms and got worried that they were all related, so I finally went to an ortho to get checked out. I was diagnosed as likely radiculopathy C6 with labyrinthitis (not related to each other) and left with an order for PT and an MRI. The numbness, and especially the arm falling asleep, slowly lessened, plus I had some traveling to do, so I put it off.

About two months ago, my left leg just suddenly started hurting, a tendon-like pain running up the outside of my leg, when I would walk. And my knee started wanting to give out on me. I figured I'd pulled something walking around and just tried to stay off of it for a few weeks. I alternated between the tendon feeling bad and my inside hip -- like a groin muscle or someting -- hurting when I walked. This lasted a couple weeks.

Then about a month ago, maybe 6 weeks ago now, the bottoms of my feet started feeling numb. I didn't think much about it at the time because I figured maybe I was sleeping on my legs funny or it was just the cold weather. But then the numbness started spreading to my right foot, then up my right calf and into my thighs. It progressed that way over a few weeks until now both feet and legs, and partially my groin and butt area are numb. Not completely, but partially. As the numbness spread I also started feeling numb in my torso, though my right torso is worse than my left side, and that seems to come and go in severity more than the rest of my body. I also have some balance issues, but that seems mostly related to the numbness in my feet -- primarily when I'm doing things that require fine motor control (like navigating stairs) or when my eyes are closed, like in the shower. I can walk and stand and get around fine, though the balance issues and numbness in my feet are annoying. I also sometimes feel like my knee joints are swollen, but I don't think they are - I think that might be a symptom of the numbness.

I went to see my ortho again and she ordered an MRI of my hip, and since I have had back problems for a while, said we should wait on an MRI of my back for now, that the numbness was probably related to a peripheral nerve or disc issue. But at that point the numbness was progressing up my leg and toward my groin and I was getting nervous, reading about loss of bladder control etc. I ended up going to the hospital to get evaluated -- this was last week.

In the hospital I saw a neurologist who ran me through a battery of tests and said my reflexes and motor functions are fine, I don't have any muscle weakness, but that I do have some balance issues consistent with loss of sensory input from my feet/when my eyes are closed. She said since my symptoms progressed from feet up in a rapid progression she at first thought possibly Giullian-Barre syndrome, but that since I don't have any muscle weakness or cold symptoms recently she didn't believe that was the case. She said she didn't think there was any imminent danger but that I should have the rest of my spine imaged. My ortho ordered the spine MRIs. Those were done earlier this week.

Some of this progression of symptoms could be interrelated, but some may not.... I just mention for completeness' sake in case any of this strikes a chord.

So tonight my ortho called me with the results of the spine scans from this week, and said that I do show some disc protrusions that could be causing some of the symptoms. But that the report from the radiologist also said my scans show "some lesions that suggest a demyelating process which indicates MS." And my ortho referred me to a neurologist that specializes in MS.

I know an MRI can't diagnose MS. But it doesn't sound good. I guess I'm just wondering if, after reading all of that, it's really reasonably possible that it could be anything else but MS. I'm seeing my life flash before my eyes, wheelchair and all of that, when there's so much I still want to do.

Worried,
kw

kw202 wrote:In late July, I started feeling numbness in two of my fingers of my left hand and my arm would randomly fall asleep about once a day. A few weeks after that started, I came down with vertigo-like symptoms and got worried that they were all related, so I finally went to an ortho to get checked out. I was diagnosed as likely radiculopathy C6 with labyrinthitis (not related to each other) and left with an order for PT and an MRI. The numbness, and especially the arm falling asleep, slowly lessened, plus I had some traveling to do, so I put it off.
…
Then about a month ago, maybe 6 weeks ago now, the bottoms of my feet started feeling numb. I didn't think much about it at the time because I figured maybe I was sleeping on my legs funny or it was just the cold weather. But then the numbness started spreading to my right foot, then up my right calf and into my thighs. It progressed that way over a few weeks until now both feet and legs, and partially my groin and butt area are numb. Not completely, but partially. As the numbness spread I also started feeling numb in my torso, though my right torso is worse than my left side, and that seems to come and go in severity more than the rest of my body. I also have some balance issues, but that seems mostly related to the numbness in my feet -- primarily when I'm doing things that require fine motor control (like navigating stairs) or when my eyes are closed, like in the shower. I can walk and stand and get around fine, though the balance issues and numbness in my feet are annoying. I also sometimes feel like my knee joints are swollen, but I don't think they are - I think that might be a symptom of the numbness.
…
In the hospital I saw a neurologist who ran me through a battery of tests and said my reflexes and motor functions are fine, I don't have any muscle weakness, but that I do have some balance issues consistent with loss of sensory input from my feet/when my eyes are closed. She said since my symptoms progressed from feet up in a rapid progression she at first thought possibly Giullian-Barre syndrome, but that since I don't have any muscle weakness or cold symptoms recently she didn't believe that was the case. She said she didn't think there was any imminent danger but that I should have the rest of my spine imaged. My ortho ordered the spine MRIs. Those were done earlier this week.
…
So tonight my ortho called me with the results of the spine scans from this week, and said that I do show some disc protrusions that could be causing some of the symptoms. But that the report from the radiologist also said my scans show "some lesions that suggest a demyelating process which indicates MS." And my ortho referred me to a neurologist that specializes in MS.

I know an MRI can't diagnose MS. But it doesn't sound good. I guess I'm just wondering if, after reading all of that, it's really reasonably possible that it could be anything else but MS. I'm seeing my life flash before my eyes, wheelchair and all of that, when there's so much I still want to do.

Welcome to ThisIsMS, kw202.

First of all, MS is a diagnosis of exclusion. The other more likely possible causes for your symptoms must be ruled out first before MS can be considered. Your symptoms are common to many conditions. Not even lesions are definitive for MS; lesions can be found in patients with migraines, with vitamin B12 deficiency, and other conditions.

Numbness/tingling in the legs and arms is the definition of "peripheral neuropathy." This is also a common symptom in many conditions. In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following:

http://peripheralneuropathycenter.uchic ... #bloodtest\

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

I hope your GP has started to order these tests. Specialists usually only consider possibilities within their expertise. (Although any physician, even your neurologist, CAN and SHOULD order these – starting especially with testing for B-12 deficiency)

Start with a thorough screening to rule out a vitamin B12 deficiency. Initial testing usually involves #1 a serum B12 test (or the newer, more reliable HoloTc test), #2 RBC folate test, #3 a serum homocysteine test, and #4 a methylmalonic acid test (either the serum or urinary form). The serum B12 test alone is not adequate to discover B12 deficiency.

There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B 12 deficiencies and patients went on to develop irreversible neurologic damage

Request your own copy of any test results – it is important to have the actual numbers.

It is entirely possible that "it could be anything else but MS." You need more information; worrying won't help. We wish you all the best. Please let us know how it goes.

Thanks much for your reply. My ortho did order a battery of blood work although that was before this latest MRI and was more related to whatever is going on with my hip. I'm now being referred to a neuro who specializes in MS but I haven't made that appointment yet.

My lab work order is in the car but I'm not sure how thorough the screening is for all those things. Would you recommend I ask my ortho to order additional tests if some of those aren't included? Or go to my GP for that?

Thank you so much.

KW

Ok. Got the lab orders. Here's what's been ordered.

Anti ccp
ANA
CRP
C4Comp
CBC
CMP
ESR
FreeT3
HLA-b27 antigen
Lyme
Rheumatoid factor
SPE
Testo
TSH
Vitamin D total
Liver function

KW

B12 is really the proverbial elephant in the room. None of the tests LyndaCarol has mentioned are listed in your test order. It's critically important to test for B12 issues in anyone experiencing neurological issues. If your current doctors won't run these simple tests, then find one that will.

Please see the following discussion topic for more info about B12. http://www.thisisms.com/forum/natural-a ... 24857.html

I haven't asked yet - I am so new to this stuff I didn't even know to ask - but I will today. Thank you.

Well the first round of bloodwork (which was ordered because of a potential degenerative issue with my hip, not related to anything with MS... ) is back, mostly normal. I don't have the actual levels because I haven't seen the paperwork, however that list of tests I posted earlier here - the first one - was basically normal except for two things.

Vitamin D.
And thyroid.

My vitamin D came in at 9.9. She said the normal range is 30-100. So that's low. I understand people here also feel these "normal" ranges are often misstated, so I'm probably even worse off than that appears! They are calling in a high-dose vitamin D for me.

Also she said two thyroid factors, c-reative protein and c4 complement are a "little" high. I don't have the figures.

But, a couple of answers.

KW

kw202 wrote:My vitamin D came in at 9.9. She said the normal range is 30-100. So that's low. I understand people here also feel these "normal" ranges are often misstated, so I'm probably even worse off than that appears! They are calling in a high-dose vitamin D for me.

Those units are likely ng/mL. It's been discussed previously that a level around 50 ng/mL is a good target. If you're taking high dose vitamin D3, make sure that you're also taking some magnesium, preferably in the form of magnesium glycinate which is a highly absorbable form. Vitamin D3 supplementation tends to use up magnesium stores, so it's best to take the magnesium at a time separate from the D3 to give your body a chance to absorb it.

Thank you. I'll do that. Is there a suggested dose?

kw202 wrote:Thank you. I'll do that. Is there a suggested dose?

200-400 mg of Magnesium per day. The RDI for Magnesium is 400 mg.

kw202 wrote:My vitamin D came in at 9.9. She said the normal range is 30-100. So that's low. I understand people here also feel these "normal" ranges are often misstated, so I'm probably even worse off than that appears! They are calling in a high-dose vitamin D for me.

If you get a prescription vitamin D, make sure that they give you vitamin D3 and not vitamin D2. The D3 form is also known as cholecalciferol and is the natural form that's used by our bodies. In contrast, the D2 form is made by plants and goes by the name ergocalciferol. It's not as effective as D3 and may also block some of the activity of D3.

Comparison of vitamin D2 and vitamin D3 supplementation in raising serum 25-hydroxyvitamin D status: a systematic review and meta-analysis.
http://www.ncbi.nlm.nih.gov/pubmed/22552031

Higher 25(OH)D2 is associated with lower 25(OH)D3 and 1,25(OH)2D3.
http://www.ncbi.nlm.nih.gov/pubmed/24828488