This Is MS Multiple Sclerosis Knowledge & Support Community

This is my story and I appreciate you taking the time out of your day to read it. I do not have a diagnosis of MS as I am just now starting to go to the doctor. I work in the medical field but have been neglecting my own health to take care of my autistic son! This is a list of my symptoms. I am 24 years old now and will be 25 next month. I want to know if my story is similar to yours and does this sound like MS??

Age 16 thru Present - Random sharp, intense pains all over body mainly concentrated in ribs, back of skull and upper Left sided back/scapula area.

Age 21 thru present -Fatigue that is getting worse, foggy thinking, memory not as good as it used to be frequent headaches(tension and migraine), feeling drained of energy and just generally not feeling well. Bowel urgency.... November 2011- went to ER for chest/back pain while breathing in. It felt like there was a tight band around my back. CT with contrast was performed to rule out embolism. No clots were seen but D-Dimer was extremely high- no treatment and was released from hospital. A large thyroid nodule was also reported on CT scan but I was unaware fro an entire year until I had to request the CT scan report from the hospital for something else. nodule was biopsied 4/2013 and was said to be normal and I had it biopsied again 9/2014 with an indeterminate result and has been sent for further testing.

August 2012- I had some labs drawn to rule out autoimmune thyroid conditions and also because my fatigue and pain was not letting up. The only abnormal finding was PTT-LA screen with positive Hexagonal Confirm. It was never followed up with because the doctor thought these finding were not important.

November 2013- I had an accident at work and was drawing up an injection for a patient and Delestrogen solution got into left eye. The eye twitched almost daily for 5 months then resolved.

February 2014- Started an oral contraceptive called Minastrin. I only took it for 3 days. On the 3rd day I had a severe headache with visual disturbances and facial tingling. My left hand went completely numb and I felt unsteady on my feet. It all resolved within 24 hours.

Late February 2014- I was sitting in a chair at a restaurant with a coworker and had a searing, horrible, radiating pain in my left inner thigh approximately mid way up leg. It felt like it was coming from deep within my leg. It occured intermittently for a few days then resoled until July 2014 when it returned full force.

July 2014- Severe Left sided inner thigh pain again and the area was very tender to touch and was lumpy/knotty. Went to ER after 1 week of this and the doctor said it was "inflamed muscle" He ordered no tests at all and based diagnosis off the fact that I went jogging 3 weeks before - BUT THIS DOES NOT EXPLAIN WHY I HAD THE SAME EXACT PAIN IN FEBRUARY!!!! the ER doc sent me to a primary care doctor who ordered a ton of labs for my complaints of leg pain and fatigue. The labs were done in August and ruled out Lupus, Myasthenia Gravis, Lyme Disease, Vitamin B12 deficiency, RA and a few other things. The ONLY abnormal lab was my Vitamin D level which was 23.

August 2014 thru present- pain continues to worsen, I also feel a radiating pain in sciatic nerve area. I get pins and needles with chill bumps all over body but especially my entire left side including chest and arm. My feet get a burning feeling in them at times. I drop thing with my left hand frequently and stumble/trip a lot more than usual. I have frequent nausea and dizziness- especially in the morning. My left hand had a slight tremor. I get random muscle aches and feel like my body is failing me- I feel like an 80 yr old trapped in a 24 year old's body. I went to the endocrinologist for my thyroid in September and my levels were fine-- he did not very decreased reflexes in Left leg and arm ad stated that my strength seemed decreased in the left side. He sent me for nerve conduction testing which was done today, October 20th 2014 and the neurologist had horrible bedside manner and refused to listen to my complaints. He strictly dd the left arm and left leg testing and stated that there is no neuropathy but I do have some atrophied muscle in left foot.

I NEED A DOCTOR THAT WILL LISTEN TO ME!!! I have been researching my issues online and EVERYTHING is pointing to MS. I would love to hear your opinion !!!

Welcome to ThisIsMS, Julez.

All I needed was your last sentence, "I would love to hear your opinion!!!" And here it is:

MS has the same symptoms as many other conditions. MS is a diagnosis of exclusion, made after other more likely conditions have been ruled out. You and many doctors, especially the PCP in August, have been doing well to work through the list of possibilities.

But because my current focus is on vitamin B12 deficiency, I see your situation in that light:

Any person at any age (even a teenager of age 16) can develop a B12 deficiency.

Your symptoms (pain, fatigue, brain fog, headaches/migraines, bowel problems, chest pain, visual disturbances, tingling, numbness, nausea, dizziness, weakness, etc.) are consistent with a B12 deficiency.

You have an autistic son – as you may know, some experts think that some cases of autism are the result of a B12 deficiency. And B12 deficiency can run in families.

Many medications, including oral contraceptives, can block the absorption of vitamin B12.

Your primary care physician ordered labs in August and ruled out a vitamin B12 deficiency (among other strong possibilities). I wonder if this was on the basis of a serum B12 test alone. Initial thorough testing should include #1 a serum folate test, #2 a serum homocysteine test, and #3 a serum (or urinary, thought to be more accurate by some experts) methylmalonic acid test.

Blood tests can be misleading – even if the level of B12 in the blood seems fine – it should be above 550 pg/mL (In the US, the lab cutoffs for deficiency are set too low, usually at 200 pg/mL.), there can still be a deficiency in the tissues. It is possible that the B12 is not being transported from the blood to the cells. By the way, when you are having blood tests, I encourage you to request a copy of all your test results for your own files.

I suggest you start with a GP you trust and feel you can work with. If you feel more comfortable with a specialist, ask to see a hematologist. Discuss with the doctor your well-done written list of symptoms and thorough screening for a possible B12 deficiency. If this is the root of all or some of your symptoms, B12 deficiency is easily and inexpensively treated; caught early, symptoms are usually reversible.

Also, 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.). These authors suggest that the B12 level should be at 1000 pg/mL or more if a patient presents with neurologic symptoms (which you have): http://b12awareness.org/could-it-be-b12 ... diagnoses/

Go see a neurologist specializing in MS - try the Cleveland Clinic if you have one in your area or are able to travel to one. They will see you within a week and have the right doctors to make the correct diagnosis.

thanks for the reply!! Serum Folate was 17.4 and B12 was 442. These were LabCorp labs and it just says viatmin B12.. which seemed kind of vague. I will definitely be researching B12.

soo. my PCP called me with the nerve conduction results- he said it looked normal so he suspects MS. He is ordering an MRI

Julez wrote:soo. my PCP called me with the nerve conduction results- he said it looked normal so he suspects MS. He is ordering an MRI

Hi Julez,
An MRI for MS typically uses a gadolinium contrast agent to highlight active lesions. The gadolinium can be hard on the kidneys so it's best to drink plenty of fluids to help flush it out.

I am terrified of the gadolinium contrast! I have researched it and I've read that MRI for MS will show lesions without contrast.

Julez wrote:I am terrified of the gadolinium contrast! I have researched it and I've read that MRI for MS will show lesions without contrast.

Yes, an MRI without contrast will show lesions, but it won't indicate which lesions are active and which are old. Active lesions will have white blood cells crossing the blood brain barrier (BBB). This makes the BBB permeable to the contrast which shows up as white spots on the MRI. The presence of active lesions may alter your doctor's recommendations.

By the way, after one MRI a few years ago, I drank about 8 cups of decaf green tea as the EGCG is supposed to chelate metals. Following a more recent MRI, I used R-lipoic acid (actually sodium R-lipoate) since it has two thiol groups which can chelate metals. I took a 100 mg dose every 2 hours. However, after about 5 or 6 doses my stomach was a bit upset so I stopped. I don't know if either of these methods actually helped, but I felt better doing something. Note that I had an MRI with contrast in 2001 about 1.5 years after my diagnosis. I didn't do anything after this MRI and my doctor didn't even tell me to drink extra fluids. About 10 years later I had a urine toxic metals analysis with dimercaptosuccinic acid (DMSA, an FDA approved chelation agent). In fact, all of my immediate family members did due to lead concerns. My analysis was the only one to indicate the presence of gadolinium. As a result of those results indicating that the gadolinium sticks around, I feel it's important to drink extra fluids at a minimum to help get rid of the stuff.

Thanks for your input!

No one has ever told me to drink fluid, or there are any risks of the gadolinium !! lol

Seeing how we know I have MS now I am going to try to opt out of the injections.

I have decided to opt out of MRIs, period. They really can't tell me much/help me much anymore, at least I don't think they can.

Youarethecure wrote:No one has ever told me to drink fluid, or there are any risks of the gadolinium !! lol

There are several different types of gadolinium contrast agent available. The difference is with the structure of the molecule used to chelate the gadolinium metal. Some may hold on to it better than others, but an MRI tech told me that they all dechelate to some extent. All of them carry a risk of kidney problems. Here's an example...

Mayo Clinic wrote:Check with your doctor or nurse right away if you or your child have burning or itching of the skin, deep bone pain in the hips or ribs, joint stiffness, a limited range of motion in the arms and legs, muscle weakness, red or dark patches on the skin of the arms or legs, or skin swelling, hardening, or tightening within the first few days or weeks after you receive this medicine. These may be symptoms of a very serious disease called nephrogenic systemic fibrosis (NSF).

This medicine may increase your risk of having acute kidney injury (AKI). This has occurred in patients with severe kidney problems, and the risk is increased with high doses of gadobutrol.

For my last MRI, my neurologist required a recent blood test indicating that my kidney function was ok. In addition, I had to fill out an extensive medical history. I later concluded that this was so the imaging company could reduce their potential liability.

Let me ask you a question. Have you had a weird rash in the last year or so? If so, was it all on the left side of your body? Here's why I'm asking. About 6 months ago I got a small rash on the left side of my bikini line and an even smaller one on my left boob. I didn't think anything of it at all. About 2 months later, I started having severe pain in my left leg and foot and sciatic area. I went to the doctor, and he said, "I know exactly what you have! You had shingles, and the pain is called postherpatic neuralgia." I have to take Lyrica for the pain, but it's definitely getting better with time. Apparently you can only get shingles if you've had chicken pox in the past. I did when I was 8 years old. I'm 38 now. I just wanted to share this in case you had a rash and dismissed it like I did. Good luck with your testing!

I've never had chickenpox, I do have a strange rash but the physician I work for says it's psoriasis. t starts off like a bug bite, small and itchy kinda looks like a pimple then the area becomes thick/plaquey and red. itchy and round similar to ringworm. I get one then it clears up and moves to a different spot