Does this sound like it could be MS?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Does this sound like it could be MS?

Postby stellycat » Wed Oct 09, 2013 8:35 am

Hi everyone,
I'm a 25 yo F. I take 30 mg of Notriptyline per day; 10 mg Propanalol per day; and 50 mg of Imitrex as needed, all for migraines. I've been on them for about a year.
I've been having some medical issues lately and am wondering about the possibility of my symptoms being related to multiple sclerosis.
Here are my symptoms:
1) My primary symptom is pain, and this is by far the main one affecting my life. I've had this pain for almost five years now, and it has been getting progressively worse. I've tried physical therapy, lidocaine shots, acupuncture, massage, exercise, TMJ mouthguard, TMJ exercises, rest, heat, ice, anti-inflammatory meds, the meds I'm on now, new pillows, a new bed, yoga, and chiropractic care. The pain is primarily on the right side of my neck, but it also goes into my arm, shoulder, hand, back, trapezius, jaw, and head. My muscles are in constant palpable knots that never go away. My pain sometimes occurs with migraine but is there all the time. The pain is tingly, burning, and achey all at once. Sometimes I do get it on the left side too and lately my whole back has been in muscle spasms to the point where I have difficulty moving around. Sometimes it's so bad I can't even function.
2) Hip and ankle pain: I get a lot of pain in my hips and sometimes have difficult moving them or with feeling like they need to "crack." It's nowhere near as bad as my neck and head pain, but nonetheless annoying. Ankle starts a lot of times when I walk.
3) Blurry vision: some days my vision gets very blurry for a few hours to the point where I have difficulty reading and driving. It goes away and then returns later.
4) Eyes feel like they are shaking when I close them. It's a strange sensation, but sometimes my eyes/vision feel like they are shaking/moving when I close them.
5) Shooting pain in my jaw. Sudden shooting pains in my back that last for a second and make me jump suddenly. I thought for a while this might have been kidney pain but haven't really had any other symptoms relating to kidneys.
6) Excessive urination: I have to get up at least 3 x a night to pee, even if not a lot comes out. I also have some dribbling after I pee. For instance, I have to go back and pee immediately after I've already peed so that a few drops can come out because the need still feels urgent.
7) Difficulty sleeping/waking up a lot/getting comfortable.
8) Suddenly tingly feeling on my scalp/head
9) arm weakness - this is in my arm where I have the most of my pain. When I do any kind of activity, even just sweeping or vacuuming, that whole arm goes into muscle spasms.
10) fatigue - I'm so tired lately. I used to be a morning person, but now I can't seem to get out of bed no matter how many hours I've slept.
11) Entire right side of my face constantly feels like it's being "pulled". I get numbness in it and pain in my eye as well.
12) constantly dropping things and walking into walls - my fiance and I often joke about this because I drop things SO frequently even when I'm not holding something else. I'm just wondering if it isn't something besides me being a klutzy, since it's happening so much lately.

Here are a list of doctors I've seen and test results I've had:
1) Primary care doctor: Did routine bloodwork during a checkup. Had me redo the bloodwork four times because each time my hemoglobin was very low and I was showing a lot of anemia with normal levels of ferritin. Also ordered an ultrasound of my abdomen because he thought it felt a bit swollen. They found it to be normal except my liver was slightly enlarged.
2) Headache/migraine doctor: diagnosed my pain as migraines and gave me my current prescriptions. They've helped but not all that significantly.
3) Rheumatologist: ordered blood work and found my ANA to be slightly elevated. ESR normal. No lupus or rheumatoid arthritis specific markers found. Diagnosed my pain as fibromyalgia.
4) orthopedic: did an MRI of my neck/jaw. Didn't find anything except straightening of my spine indicative of muscle spasms. Discs, etc. normal. Only thing he commented on was that my reflexes were too reactive when he checked them.
5) Pain doctor: did electrical acupuncture and shots in my neck. No relief.
6) chiropractor: just said I had a lot of muscle spasming. no relief here.
I'm just looking for answers and wondering if there's something more going on than my migraines and possible fibro.
Thank you!
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Re: Does this sound like it could be MS?

Postby CaliReader » Wed Oct 09, 2013 10:30 am

Disclaimer. I'm a patient. Also, any MS type symptom can be caused by something else. It is a hard disease to diagnose.

Multiple sclerosis means many scars. They're talking about scars in the nervous system, brain, spinal cord, optic nerve. The way they test for it is to look for typical symptoms with history and neurological exam, run blood tests and other tests to rule out diseases that look like MS and take a brain MRI, often also a spine MRI, sometimes a spinal tap, sometimes evoked potential test and other tests. A neurologist makes the diagnosis.

Here is the part of your story that reminds me of what I've experienced or otherwise know about MS. I would suggest you talk to a neurologist. Also, if you search this board, there is a lot of knowledge about how to deal with things like muscle spasms and other symptoms.

pain tingly, burny
muscle spasms
blurry vision
pain in jaw,
frequent urination, urgent need
sleep problems
muscle weakness in arms
walking into walls
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Re: Does this sound like it could be MS?

Postby lyndacarol » Wed Oct 09, 2013 4:20 pm

Welcome to ThisIsMS, stellycat.

To answer your question, your symptoms could be MS or many other conditions, just as CaliReader described. There are many other possibilities that look like MS to be ruled out.

I think this page from the University of Chicago is a good place to start:

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

Especially important is this section on blood tests – has your PCP ordered these? Keep a copy of the results for your own file:

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 (Jimmylegs, here at TIMS, recommends magnesium, zinc, and copper also. A vitamin D3 test is also recommended.)
Thyroid, liver and kidney functions (especially thyroid hormones testing is recommended by Kathryn Simpkins in her book, The MS Solution)
Vasculitis evaluation
Oral glucose tolerance test (I suggest a "fasting blood insulin test" also.)
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (I think this is VERY important, as well as a mannitol-lactulose test for Intestinal Permeability.)
Lyme disease (Bartman, among other TIMS members, urge this testing.)
Hepatitis C and B

In my personal situation, I believe I have excess insulin in the bloodstream, causing insulin resistance in my smooth and skeletal muscles (and causing the "raw feeling" in my legs because the insulin is affecting the smooth muscles around my blood vessels).

Good luck in your investigations.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: "Insulin – Could This Be the Key?"
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