Confusion. New to all this.

[thatkiidsean]

Hey everyone! My name is Sean Kennedy I am 18 years old from Massachusetts. I am having a lot of different symptoms that have been going on and off for about 5 years. I have weakness in my left arm and leg, sometimes I lose feeling in this area, when I was 14 years old I was in a wheelchair due to the weakness. I have bad memory issues. I have had MRI and spinal tap and the spinal tap came back as normal but my MRI showed some lesions but I was so young the doctors didn't even send me to an MS clinic and they just wrote me off to a rehab hospital. However speed forward to now while I am 18. Some of my symptoms are slowly coming back. I quickly called a new neurologist and on the first visit she was like, "lets go ahead with MRI with contrast" So I have gotten that and I have the results from the the radiologist and I am hoping someone can help me decipher it. On the C3 vertebral I have a hemangioma. I have some volume loss in the cervical cord in the lower cervical and the upper restricted region. Mucus retention cyst is seen int he right maxillary sinus. Minima; T2 hyperintensity is also present in the right mastoid air cells. For my brain: The posterior fossa structures are anatomic. There are a few nonspecific T2 hyperintensities in the periventricular and the deep white matter of the corpus callosum. Also a lesion is also noted in the genu of the corpus callosum. That is with contrast. T2 hyperintensity is noted in the mastoid air cells. Mucus retention cyst is seen in bilateral maxillary sinuses.

Nonspecific white matter changed. Multiple sclerosis is a possibility.



Sorry for all that information!! I am just extremely confused and I am hoping someone can help me decipher this. I have been referred to the MS clinic near me and I have an appointment on the 28th.

Thank you!

Sean Kennedy

[NHE]

Welcome to ThisIsMS. Your neurologist will be the best person for interpreting the radiologist's report, though here's some limited information. A hemangioma is a benign growth of blood vessels. These often form the "raspberry" birth marks on the skin of very young children. http://www.mayoclinic.org/diseases-cond ... g-20005862 I'm unfamiliar with the consequences of having a hemangioma on a vertebrae. If it's in the wrong place, the swelling could conceivably interfere with the spinal cord. Your doctors should advise you there.

In addition, to help with sinus issues, you may want to try using a NeilMed sinus rinse. I use it whenever I feel a cold or other sinus problems starting to develop. Just follow the instructions. It's like a netti bottle, but it's a lot easier to use. http://shop.neilmed.com/Sinus-Rinse-K-E ... B00M8NZR2I Note that you can get them at stores like Target for less money.

Lastly, keep in mind that an MS diagnosis is a diagnosis of exclusion. There are several other conditions which can mimic MS symptoms. One of these is a vitamin B12 deficiency which can also produce white matter lesions in the brain. The only way to distinguish a B12 deficiency from MS is to test your B12 level. It should be between 500-1000 pg/mL. Your doctor should check your B12 level and also homocysteine, methylmalonic acid and red blood cell (RBC) folate as well.

[thatkiidsean]

Hello, My neurologist ordered 10 different blood testing. Including B12, Vitamin D, Lyme, Syphilis homoyteine, methulmalonic, etc all came back in the normal range. Thank you for the welcome!

[lyndacarol]

I also welcome you to ThisIsMS, Sean.

It is a good idea to request your own copy of any test results. It is important to have the actual test result numbers – "normal" is not adequate information.

If you are willing to share the test names, number results, and the standard ranges listed by your lab for each test (It is perfectly understandable if you consider this information too personal.), these tests results may trigger thoughts and opinions among folks here.

I also suggest that you keep a written list of your symptoms/timeline (memory often fails us):
Weakness in left arm and leg (requiring wheelchair in 2011)
Numbness ("loss of feeling") in arm and leg
Forgetfulness (bad memory)
Neurological lesions
Etc.

[thatkiidsean]

Hello! Thank you so much for your help. My apologies if I have said too personal of information. I am just confused and feel like im being poked and prodded. I will keep a notebook of my symptoms and timeline! What should I expect on my first MS visit? Again my apologies!

[lyndacarol]

My apologies if I have said too personal of information. I am just confused and feel like im being poked and prodded. I will keep a notebook of my symptoms and timeline! What should I expect on my first MS visit? Again my apologies!

Hi, Sean.
You have nothing to apologize for. The information you have shared with us is not at all too personal for us. I only meant to give you the option of maintaining your privacy – some people are reluctant to give information about themselves openly on the Internet.

In us, you have found a community of new friends. We do not have all the answers, but we are willing to offer our opinions, when asked.

You have seen your GP and your neurologist and have been "poked and prodded" quite a lot, I'm sure. You will have more at the MS clinic appointment on the 28th, but nothing should be really painful for you. Your notebook of symptoms/timeline will be good to have with you at that appointment; it will prompt your memory and be helpful in your discussion with the clinic doctor. (And, as I do, you might take a couple written questions with you. It is easier for me to think of questions in the quiet of my home; I can't forget them if they are written down!)

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

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

Looking over this U of Chicago site may prepare you somewhat for your clinic visit. We wish you all the best; please let us know how it goes.

[jimmylegs]

hi sean do you mind sharing your b12 and d3 levels? 'normal' can be a misleading finding with unfortunate consequences for uninformed patients :S