New and closer to a diagnosis????

[Grib620]

Hey everyone. I have read through some of your posts, and have found comfort in knowing I'm not alone in wondering I'm new here, so I'll tell you a little about myself. I'm 45 years old and have been having symptoms at least since September 2015. I went to my PCP in December with a list of symptoms that I had no idea if they were related; told my PCP that I wondered if they were just age related stuff or possible onset of menopause. Those symptoms at that time were:
Night sweats
Mood swings
Sore/tender breasts
Thigh pain (back of legs) not with walking or exercise
Right Shin pain not with walking or exercise
Right arm/shoulder tenderness pain to mid forearm (like lifting weights)
Bottom of right foot pain; tingling in toes
Hand Ache
Right side lower facial pain radiating into ear...burning sharp ache that ranges from a 2-3 to an 8 in intensity
Lightheaded when changing position
Left side headaches that will come and go frequently for 3 days and then subside for days at a time
Irregular periods

On exam, she found that I was showing some weakness and evidence of tongue atrophy with fasciclations. She ordered labs and MRI's of the brain and cervical spine. MRI's showed damage to hypoglossal nerve and a spot on cervical MRI that was deemed insignificant by the radiologist as it was still brighter than surrounding areas. I was referred to a neurologist and had my first appointment in January.

Since that visit, I have undergone EMG's of right side (February), lumbar puncture (April), multiple labs, and evaluation with ENT (April) and rheumatologist (April-May). Together, they have ruled out ALL rheumatological autoimmune diseases, cancer, tumors, muscle disease, and muscular dystrophy. My neurologist at my last appointment in March, said he was pretty certain we could rule out ALS. That's when he referred me to an ENT and rheumatologist to rule out anything in their specialty. Here's what my tests have shown: low positive ANA 1:80; low vitamin D, but only insufficient level (not deficiency); positive UTI; and a significant increase in C-reactive protein from .16 in December to .77 in May (still considered normal level though). EMG was positive for hypoglossal nerve damage and ulnar nerve damage.

Now something to keep in mind, my neurologist did NOT order MS testing with the lumbar puncture or in labs; no testing for IgG oligoclonal bands at all. Furthermore, since my appointment with my neurologist in March, I have experienced additional symptoms in which I have reported to my rheumatologist and via a fax to my neurologist (have not heard from my neurologist). My rheumatologist said some of my symptoms could be due to Vitamin D insufficiency, but she said not all of them including the spasticity of my right foot. Since April 7th, these have been my erratic and sometimes daily symptoms:

Thigh pain (back of thighs) not with walking or exercise
Bottom of foot pain (ball of foot); mostly right foot, but some on left too
Bottom of foot tingling in ball of foot to toes; mostly in right foot, but some on left too
Inability to curl toes on right foot; becomes tight feeling
“Crawling feeling” in bottom of right foot, front right toes, and some in left bottom foot
Tightness in bilateral calves...feels like skin stretching when bending legs.
Right calf pain
Right thigh pain/tingling (side and/or front of thigh)
Right thigh “charlie horse” pain in upper right thigh muscle
Right hand pain (ache) and weakness..difficulty holding plates, half gallon milk, laundry detergent, opening jars, etc.
Right arm (inside just down from elbow) sharp stinging pain)
Right ankle twitch
Right lower facial pain/swelling feeling
Right arm itchiness
Left upper thigh tingling (like falling asleep)
Left back thigh twitching
Left upper arm and hand weakness (worked out feeling)
Left lower buttock twitching
Left body ache
Left calf ache
Left calf twitching
Left hand pain with cramping and feeling tired (worked out feeling)
Left biceps twitch
Left eye twitch
Off balance feeling when changing position/direction
Fatigue...worn out feeling; hits hard and feel like I need to lie down
Headaches
Upper arm itching; worse on left
Upper thigh rash (looks like hives)
Periodic “Brain Fog”...memory lapses, difficulty thinking of words, etc (4/19/16 good example)
Irregular periods (2 cycles in March; then 41 days until my cycle in May).

My next follow up appointment with my neurologist is June 22nd. I am hoping he will order another EMG and MRI's; I'm planning to ask depending on what he says. I know you all aren't a doctor, but I am curious as to your opinions of these strange array of symptoms and test results this far. One thing to note too, is my rheumatologist told me that I should ask my neurologist about sending me to Shands or Mayo Clinic for further treatment/follow up. That makes me suspect that she felt it's possible MS, although she didn't say it.

Thank you for any advice or insight you can offer!

[ElliotB]

Welcome to TIMS - sorry to hear you are not well at this time...

Prior to my diagnosis, I knew I had 'something' as, like you, there were just too many symptoms to ignore. I started on a path to better health because I knew that no matter what the diagnosis was, the best possible health was paramount for a good recovery. Proper diet, regular (daily) exercise, supplements to help eliminate nutritional deficiencies (blood work will be required to determine if you have any of these) and the elimination of ALL stress from your life will get you headed in the right direction for a successful recovery. And I suggest you follow a similar path as you search for answers - sometimes a diagnosis comes quickly and other times it can be a while.

Keep in mind that there are about 400 illnesses that mimic the symptoms of MS.

[lyndacarol]

Here's what my tests have shown: low positive ANA 1:80; low vitamin D, but only insufficient level (not deficiency); positive UTI; and a significant increase in C-reactive protein from .16 in December to .77 in May (still considered normal level though). EMG was positive for hypoglossal nerve damage and ulnar nerve damage.

Welcome to ThisIsMS, Grib620.

I recommend watching this 52-minute documentary featuring Sally M. Pacholok, RN, BSN, & Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their second book, What's Wrong with My Child?); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12"


@4:50 Pacholok says, "MS is a demyelinating disease and so is B12 deficiency. You can't tell the two apart unless you test for that."

Your mention of "Shands" reminded me that Shands Hospital in Gainesville, Florida, is mentioned in this video (@20:25) at


You seem to have the actual numbers for many of your tests. What was the actual test result number for your vitamin D test? "Low" is not specific enough – it is important to have the actual numbers.

[Grib620]

Thank you for the comments, encouragement, and suggestions. My vitamin D was 24. I'm on a vitamin D supplement now. My B-12 was normal. Yes, Shands in Gainesville. I do regularly exercise (walking) and eat right; I eat as much natural foods as possible and avoid process foods and fast food except on rare occasion. The problem I'm suffering lately is that walking my usual 1.21 mile walk makes me so fatigued and off balanced feeling. My right leg gets feeling heavy with that walk or any exertion. Today I did some gardening...planted 11 plants and I felt like I had just ran 2 miles (I use to be a runner...ran a 1/2 marathon in 2010). I have been so tired this afternoon and my right leg felt heavy, achy, and tired. I don't want this to be MS, but at the same time, I'd be relieved to finally have a reason for these crazy synptoms.

Thank you again for your time and comments. I hope you all are enjoying your weekend!

[lyndacarol]

My vitamin D was 24. I'm on a vitamin D supplement now. My B-12 was normal. Yes, Shands in Gainesville.

In January, my vitamin D level was also 24 ng/mL.

I encourage you to read through the GrassrootsHealth website, http://www.GrassrootsHealth.net

As you can see from their page (http://grassrootshealth.net/media/image ... single.pdf), they recommend a reference range of 40-60 ng/mL. Some neurologists recommend that people with neurological symptoms reach and maintain a range of 80-100 ng/mL.

Please discuss raising your vitamin D level quickly and monitoring your level (by testing at least twice a year) with your doctor. Your symptoms can have many possible causes – your low vitamin D may be involved.

[Grib620]

Thank you for the information. I hope all of this resolves after raising my vitamin D. It would be great that all of this is just a result of low vitamin D.

[ElliotB]

Are you gluten free?

Do you currently take supplements, if so, what?

[Grib620]

I'm not gluten free and am now taking Vitamin D3 2000 IU. My rheumo was surprised that my vitamin D is low since I'm usually outside 1 1/2 hours minimum a week and consume vitamin D fortified foods, as well as eggs almost daily. My husband was severely vitamin D deficient in 2014 and his symptoms were not anything like I'm suffering....he had actual bone pain; severe in his legs, and he was "blanking out" daily. Like I said, rheumo said some of my symptoms can be attributed to vitamin D low levels, but she said the inability to curl my toes and other symptoms are not associated with it. So who knows; I'm just hopeful for relief to come from the vitamin D supplement and/or am answer to the issue.

[ElliotB]

You may want to do some research on gluten and consider a change. There are many good supplements you can take aside from D that may help you feel better sooner and possibly give you more energy.

[Snoopy]

Have you been to your gyn?
Some of your symptoms would be within the realm of perimenopause, those symptoms:

,Night sweats
Mood swings
Periodic “Brain Fog”...memory lapses, difficulty thinking of words, etc (4/19/16 good example)
Irregular periods
Fatigue...worn out feeling; hits hard and feel like I need to lie down
Headaches
Sore/tender breasts
Tingling
Crawling sensations
http://www.34-menopause-symptoms.com/

[Grib620]

I've been diagnosed with perimenopause for the last 5 years, but some of those symptoms have worsened and some have disappeared...no more night sweats, bad mood swings, or sore breasts. I reported those symptoms in December because I didn't know what was related and what wasn't. I honestly thought I was just suffering the beginnings of menopause. The crawling sensation is new since about the end of April and only has happened on a few occasions...literally feels like ants crawling under my feet or on my toes. Thanks though for the link...that's why I went to my PCP thinking it was all related to my perimenopause to find out that my PCP and neuro don't think it all is. At this point, I'm willing to entertain any rational explanation.

[NHE]

My B-12 was normal.

Do you have the results of your B12 test? Because of an erroneously wide standard range, it's possible to test normal, but still be deficient. If you're experiencing neurological symptoms, then you really want to be at least at 500 pg/mL and preferably between 600-1000 pg/mL. By the way, do you know if you were tested for RBC folate, homocysteine and/or methylmalonic acid?

[Grib620]

B12 is 474; RBC Folate is 634. I e had many, many things tested, but I don't see either homocysteine or methylmalonic acid in my tests.

[NHE]

B12 is 474; RBC Folate is 634. I e had many, many things tested, but I don't see either homocysteine or methylmalonic acid in my tests.

Homocysteine and methylmalonic acid (MMA) are two biomarkers that indicate how well your body is utilizing the B12 you do have. Both can be elevated if B12 is low or isn't being utilized well. Homocysteine is a cardiotoxic aminoacid. It can be elevated in the case of low folate or low vitamin B6 in addition to low B12. MMA, however, is thought to be more specific to low B12 as it can also be elevated in cases of low B12. However, false negative test results can occur in cases where antibiotics were used around the time of the MMA test.

[lyndacarol]

B12 is 474; RBC Folate is 634. I e had many, many things tested, but I don't see either homocysteine or methylmalonic acid in my tests.

Homocysteine and methylmalonic acid (MMA) are two biomarkers that indicate how well your body is utilizing the B12 you do have. Both can be elevated if B12 is low or isn't being utilized well. Homocysteine is a cardiotoxic aminoacid. It can be elevated in the case of low folate or low vitamin B6 in addition to low B12. MMA, however, is thought to be more specific to low B12 as it can also be elevated in cases of low B12. However, false negative test results can occur in cases where antibiotics were used around the time of the MMA test.

From page 156 of What's Wrong with My Child? by Sally M. Pacholok, RN, BSN and Jeffrey J. Stuart, D.O.:

Costs (approximate) of commonly used blood tests for B12 deficiency:

Serum B12 (outdated test)… $50
HoloTc (newer, more reliable)… $118
Serum homocysteine… $147
Methylmalonic acid test (serum or urinary form)… $150

It is my understanding that the urinary form of the methylmalonic acid test is more accurate.