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Ive had pain since I can remember. These pains are debilitating but as time has gone by I have learned to "live" with it. However, lately the pain has spread to pretty much all parts of my body. Sometimes its a quick sharp pain that goes on a sort of cycle. Other times its a non stop "dull" pain. I call them flare ups. Because I noticed an increase in occurrence and possible correlation with migraines I visited my doctor. She ran a series of test, including Lupus and RA (previously tested a few times before - always negative). I explained a new flare up where ALL my joints were extremely painful. It felt as if I had ran a marathon. She mentioned MS and after many months of fighting with insurance I was sent to see a Neurologist.
I had another round of blood work and MRI. I'm waiting for results. I have my MRI images however I don't know how to interpret very well. However, I have been getting a lot of pain in my neck. Shooting/pulling pain just behind and below my ear. I have scanned (Ultrasound) my neck a few times and have several large lymph nodes but tonight I noticed that my right internal jugular vein is quite smaller than my left. I'm reading that there is some correlation to smaller IJVs. Any thoughts? I'm somewhat freaking out. I'm unsure if I'm overreacting but feel like I need to bring it up to my Neurologist. I'm just looking to find an answer to all my discomfort. I have so many symptoms but some days I'm not sure they are related. I'm not even in my 30's and some days my body feels 80 and others I feel fine.
Re: Concerned but trying not to panic. Help!
Posted: Sat Dec 12, 2015 9:02 am
by lyndacarol
AT86 wrote:Ive had pain since I can remember. These pains are debilitating but as time has gone by I have learned to "live" with it. However, lately the pain has spread to pretty much all parts of my body. Sometimes its a quick sharp pain that goes on a sort of cycle. Other times its a non stop "dull" pain. I call them flare ups. Because I noticed an increase in occurrence and possible correlation with migraines I visited my doctor. She ran a series of test, including Lupus and RA (previously tested a few times before - always negative). I explained a new flare up where ALL my joints were extremely painful. It felt as if I had ran a marathon. She mentioned MS and after many months of fighting with insurance I was sent to see a Neurologist.
I had another round of blood work and MRI. I'm waiting for results. I have my MRI images however I don't know how to interpret very well. However, I have been getting a lot of pain in my neck. Shooting/pulling pain just behind and below my ear. I have scanned (Ultrasound) my neck a few times and have several large lymph nodes but tonight I noticed that my right internal jugular vein is quite smaller than my left. I'm reading that there is some correlation to smaller IJVs. Any thoughts? I'm somewhat freaking out. I'm unsure if I'm overreacting but feel like I need to bring it up to my Neurologist. I'm just looking to find an answer to all my discomfort. I have so many symptoms but some days I'm not sure they are related. I'm not even in my 30's and some days my body feels 80 and others I feel fine.
Welcome to ThisIsMS, AT86. You asked, "Any thoughts?" Here are mine:
Did your latest "round of blood work" includes nutrient testing? Has your doctor ordered the 4 initial tests (1. A serum B12 test, or the newer, more reliable HoloTc test; 2. RBC folate test; 3. A serum homocysteine test; and 4. A methylmalonic acid test) that are necessary to rule out a vitamin B12 deficiency? (The outdated "serum B12" alone is not adequate.) Any person at any age (even in her 20s!) can develop B12 deficiency.
Has your magnesium status been determined? In view of your migraines, low magnesium could play a role in them according to the following article:
"Both oral and intravenous magnesium are widely available, extremely safe, very inexpensive and for patients who are magnesium deficient can be highly effective. Considering these features of magnesium, the fact that magnesium deficiency may be present in up to half of migraine patients, and that routine blood tests are not indicative of magnesium status, empiric treatment with at least oral magnesium is warranted in all migraine sufferers."
Ask your GP to order testing for B12, iron, magnesium, zinc – deficiencies in these nutrients can cause their own problems; e.g., low magnesium can negatively affect the muscles. These nutrients are often low in people with MS (if that is a concern of yours). Do not take supplements before testing, as doing so can skew test results. Perhaps you have a problem absorbing nutrients. (Also, request your own copy of test results.)
Re: Concerned but trying not to panic. Help!
Posted: Sat Dec 12, 2015 2:50 pm
by AT86
Thank you for your input. I will look over my Lab results from February and the recent ones. I became more concern when, as a trained sonographer, I noticed I was not visualizing my RT IJV when checking on my thyroid and neck lymph nodes.
Can MS present itself over a long period of time? All cases I've read about seem very severe and rapidly progressing. I was diagnosed as a child with "growing pains" which have only gotten worse. My son is now presenting with these same pains and i hate to ignore them if its genetic.
I just feel that these migrains, pain, fatigue, and numbness have to be somehow related. Maybe the 4th Dr will finally give me some answers.
Re: Concerned but trying not to panic. Help!
Posted: Sat Dec 12, 2015 3:57 pm
by lyndacarol
AT86 wrote:I became more concern when, as a trained sonographer, I noticed I was not visualizing my RT IJV when checking on my thyroid and neck lymph nodes.
Can MS present itself over a long period of time? All cases I've read about seem very severe and rapidly progressing. I was diagnosed as a child with "growing pains" which have only gotten worse. My son is now presenting with these same pains and i hate to ignore them if its genetic.
I just feel that these migrains, pain, fatigue, and numbness have to be somehow related. Maybe the 4th Dr will finally give me some answers.
Every case of MS is unique – each patient can have a different collection of symptoms; each person's timeline is different – some are mild and slow, others are severe and fast. MS is completely unpredictable.
I also had "growing pains" (leg pains) as a child. Mine stopped around age 13.
Again, I urge you to request nutrient testing; I think it is logical to begin with vitamin B12. I have read that about 40% of the American population has suboptimal B12 levels. And… B12 deficiency can run in families. If your son must ever have a blood test, it might be a good idea to test his B12 level, too. B12 is vital for a child's growth and development.
I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.). http://b12awareness.org/could-it-be-b12 ... diagnoses/
Or… perhaps it's easier to watch a YouTube video:
Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12" (52 min.)
@25:50 On-screen statement: "It is medically negligent not to rule out B12 malabsorption in symptomatic patients."
You know your body best – if you feel that your symptoms are somehow related, I think you are probably right. Compose a written list of them and discuss your list with doctor #4. All the best to you!
Re: Concerned but trying not to panic. Help!
Posted: Sun Dec 13, 2015 8:15 am
by AT86
Thank you so much for all the great info!!!
Re: Concerned but trying not to panic. Help!
Posted: Sun Dec 13, 2015 10:15 am
by lyndacarol
lyndacarol wrote:
AT86 wrote:I became more concern when, as a trained sonographer, I noticed I was not visualizing my RT IJV when checking on my thyroid and neck lymph nodes.
Can MS present itself over a long period of time? All cases I've read about seem very severe and rapidly progressing. I was diagnosed as a child with "growing pains" which have only gotten worse. My son is now presenting with these same pains and i hate to ignore them if its genetic.
I just feel that these migrains, pain, fatigue, and numbness have to be somehow related. Maybe the 4th Dr will finally give me some answers.
Again, I urge you to request nutrient testing; I think it is logical to begin with vitamin B12. I have read that about 40% of the American population has suboptimal B12 levels. And… B12 deficiency can run in families. If your son must ever have a blood test, it might be a good idea to test his B12 level, too. B12 is vital for a child's growth and development.
I suggested blood tests for your son, but there is an alternative to one test. Thorough, initial B12 testing should include a methylmalonic acid test – this test is available in a serum form or in a urinary form. In fact, some experts consider the urinary form to be more accurate. (This test does not measure B12 specifically; but if the MMA results are high, it indicates that the B12 level is low.)
Perhaps a urinary methylmalonic acid test (uMMA) could be conducted on your son. Certainly it would be easier for a child to tolerate.