Possible MS would like input

[amoore282]

Hi, All. My name is Anita, I am 45 years old. I just recently got referred to a neurosurgeon/neurologist due to my thoracic spine having 4 ruptured disc. It happened in an auto accident 5 years ago and has severely progressed. Some of my symptoms can be explained by this but many cannot. I am listing all of my symptoms below. The ones with * have been going on 4-5 years or longer. The rest have began within past 6 months. I finally just put it together that they could all be related when I mentioned some of them to my current doctor and he sent me for MRI of cervical and thoracic spine. After that he wouldn't touch me and said I have to see neurologist. Symptoms:
severe back pain thoracic region / spasms
frequent muscle spasms in calves
*loss of coordination, trouble walking
*hearing loss
vision loss (complete loss 4 years ago)-unexplained
*trouble swallowing (more in getting to the back of my throat)
*urinary and bowel incontinence
tremors in hands
*numbness/tingling feet-legs/hands-arms
short term memory loss
fatigue ( have been on b12 shots over 2 years every 2-4 weeks)
depression / anxiety
seizures (grand mal)
loss of muscle use in legs ( 2 years ago)
involuntary jerking in arms / sometimes legs
frequent urinary tract infections
*nightime bedwetting / bowel incontinence
*migraines
*facial numbness
changes in voice-raspy and low volume can't get louder
trouble with thinking process, forming ideas

* = new or recent symptom
My question is are these consistent with MS? I have to wait a month and 1/2 for my appt they are booked solid. They are going to call me if they get a cancellation so I can get in earlier. I know that is an absurd amount to list and a lot of it had seemed trivial at the time but I don't want to be misdiagnosed so I am trying to be thorough. Does anyone who is diagnosed with MS thing that fits me or am I worried for no reason? Thank you for any advice. Feeling overwhelmed. Anita M.

[ElliotB]

You obviously have something. It could be MS but it could also be something else - there are around 400 illnesses that mimic MS. Anyone here, whether they are a doctor or not (most are not), would only be guessing at this point (as am I and I am not a doctor) based on the info you are providing which is not what you want. Not only do you need to see a neurologist with your MRIs but I suggest that you should probably only see a neurologist that specializes in MS - they know what to look for. Be patient - let the professionals do their job so you don't get mis-diagnosed.

I know you are scared. And impatient. If you don't want to wait and can afford it, go elsewhere. I don't know if there is a Cleveland Clinic in your area but their Neurology Department will usually see a new patient within a few of days. There are many of them across the country. If there isn't one nearby and you can afford it, make an appointment and make the trip to one. Or find a MS specialist and do the same.

There is a wealth of knowledge on this site (and on the web) - if you have not already done so, read through the many threads from those without a diagnosis. And know that you will feel better soon. And know that there are things you can do for yourself now without a diagnosis that can possibly help you feel better sooner.

[lyndacarol]

Welcome to ThisIsMS, Anita (amoore282).

Since you are seeking "any advice," here is mine:

Your list of symptoms was very well done! Your symptoms are consistent with MANY diseases, including MS – which is a diagnosis of exclusion. The more likely causes of the symptoms must be ruled out first before the diagnosis of MS can be made. Your "numbness/tingling feet-legs/hands-arms" is called "peripheral neuropathy." The University of Chicago suggests investigating peripheral neuropathy by testing for 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

And ask for your own copy of any test results. Please note that the first blood test the U of Chicago suggests is for vitamin B12. Since all your symptoms are consistent with a B12 deficiency, I agree with the U of Chicago that this is the place to start. BUT since you have been getting B12 shots over the last two years, blood test results for B12 would be skewed and unreliable. By the way, if these injections have been done in a doctor's office in the US, they are cyanocobalamin (a.k.a. cyano B12, which is not handled by the body as well as methyl B12 is). A trial of methyl B12 injections (available from a compounding pharmacy) might be worthwhile. As you probably know, B12 is non-toxic, has no side effects, and is inexpensive. Even if you have adequate B12 in blood you can still be deficient in the cells (if you are lacking the proper transport molecule required to take the B12 from the blood to the cells). An additional blood test for this transporter molecule (called the HoloTc test) can indicate if this is the problem. Any person at any age can develop a B12 deficiency in the blood or in the tissues.

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.):
http://b12awareness.org/could-it-be-b12 ... diagnoses/

Take a deep breath, Anita. We are glad you found us.

[bonsaigirl]

There is a disease called Stiff Persons Syndrome, which has as comorbidities; seizures, anxiety, and b-12 deficiency. It is frequently mid-diagnosed as MS, and causes muscle stiffness and spasticity. You should google this condition and see if the symptoms fit yours. I went 23 years with the wrong diagnosis until I figured out for myself what was really wrong. This is a rare disease, that most doctors don't think of. There are tests that are use to make a proper diagnosis. You should check it out.
bonsaigirl