how do i convince my dr i really need some answers now!!!

[laurrose]

Hi. I am 46 and have been dealing with alot of undiagnosed symptoms for years. Lets start my story at 2001. I started having stiff neck then woke up one morning and my arm wouldnt even lift up. I did about 6 months of phy therapy and they thought it was pinched nerve. I got mri and got diagnosed with cervical disc disease. Two weeks later i got in an accident where i was a passenger in back. We were stopped on freeway completely and a car came off at about 45 mph and rearended. Anyways therein starts my journey i went to surgeon but he said i wasnt in enough pain to really warranted surgery. But after the accident i had major muscle spasms lost lots of my quality of life a year later i had another mri and had significant changes enough that i had immediate surgery and had c5,6,7 fused. 2003 i had surgery and felt ok but still had pain. Left arm was very weak. A few years later i had all the neck symptoms alk over again and severe. I had bunch of tests one being a discagram which is painful. I get jumping muscle spasms pain and no pain 2008 i had redo surgery fusion 4-7. Anyways i felt better. Then in 2010 i started getting thoracic symptoms some days were super bad where i could barely breathe. Ive been to countless drs have had thoracic lumbar and cervical mris done. My oldest sister was diagnosed with ms 2010. A few months later my other older sister also got diagnosed. They both have different symptoms. Anyways they really want me to get tested and i cant get a dr to look at all my symptoms they keep just saying its probably just my neck. Now its 2015. I have right left severe weakness, swallowing issues occasionally. Muscle spasms in throat severe ms hug symptoms. Cant hardly lift anything, dizziness, the eye optical symptom. Anyway this is getting long so i will end you get my point. I am debilitating quickly and really need to find out im a single mom symptoms have become so severe i cant work. I cant brush my hair alone or wash it because my arms wont hold up. I have applied for disability 3 times now. This time they said that i do present with a severe disability but they dont like that im young im still waiting for a decision i can barely manage some days. I am so exhausted and weak. Getting up and down is super hard ect ect. Please let me know how i can approach my dr. I have two a pain specialist neurologist and md and they ping pong me back and forth. I have had a nerve test recently snd it shiws nerve damage at c6 and c7.

[lyndacarol]

Hi. I am 46 and have been dealing with alot of undiagnosed symptoms for years. Lets start my story at 2001. I started having stiff neck then woke up one morning and my arm wouldnt even lift up. I did about 6 months of phy therapy and they thought it was pinched nerve. I got mri and got diagnosed with cervical disc disease. Two weeks later i got in an accident where i was a passenger in back. We were stopped on freeway completely and a car came off at about 45 mph and rearended. Anyways therein starts my journey i went to surgeon but he said i wasnt in enough pain to really warranted surgery. But after the accident i had major muscle spasms lost lots of my quality of life a year later i had another mri and had significant changes enough that i had immediate surgery and had c5,6,7 fused. 2003 i had surgery and felt ok but still had pain. Left arm was very weak. A few years later i had all the neck symptoms alk over again and severe. I had bunch of tests one being a discagram which is painful. I get jumping muscle spasms pain and no pain 2008 i had redo surgery fusion 4-7. Anyways i felt better. Then in 2010 i started getting thoracic symptoms some days were super bad where i could barely breathe. Ive been to countless drs have had thoracic lumbar and cervical mris done. My oldest sister was diagnosed with ms 2010. A few months later my other older sister also got diagnosed. They both have different symptoms. Anyways they really want me to get tested and i cant get a dr to look at all my symptoms they keep just saying its probably just my neck. Now its 2015. I have right left severe weakness, swallowing issues occasionally. Muscle spasms in throat severe ms hug symptoms. Cant hardly lift anything, dizziness, the eye optical symptom. Anyway this is getting long so i will end you get my point. I am debilitating quickly and really need to find out im a single mom symptoms have become so severe i cant work. I cant brush my hair alone or wash it because my arms wont hold up. I have applied for disability 3 times now. This time they said that i do present with a severe disability but they dont like that im young im still waiting for a decision i can barely manage some days. I am so exhausted and weak. Getting up and down is super hard ect ect. Please let me know how i can approach my dr. I have two a pain specialist neurologist and md and they ping pong me back and forth. I have had a nerve test recently snd it shiws nerve damage at c6 and c7.

Welcome to ThisIsMS, laurrose.

I recommend this 50-minute documentary featuring Sally M. Pacholok, RN, BSN, & her husband Jeffrey J. Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist, Yale Medical School; Ralph Green, M.D., hematologist, UC Davis; Donald Jacobsen, PhD, Cleveland Clinic (Homocysteine Research Lab):

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



If your neurologist or GP has not or will not test you thoroughly for a possible B12 deficiency (a "serum B12" test alone is not adequate to identify or rule out a deficiency!), I suggest you find a different GP and start again, or request to see a hematologist. In my opinion, this is the first possible cause of your symptoms that should be investigated.

By the way, B12 deficiency can run in families… Were your two older sisters ever screened for a possible B12 deficiency?

[laurrose]

Thats interesting anout the b12. I will ask about that. We all found it very interesting that one sister had been seeiing docs for 6 years trying to get answers and finally got a diagnosis and other sister never says a word over the years about any symptoms falls on pavement and starts feeling burning nerve pain and got a dignosis within two weeks. I am not saying i want to have it. I just want to know what is wrong so i can enjoy life.

[lyndacarol]

Thats interesting anout the b12. I will ask about that. We all found it very interesting that one sister had been seeiing docs for 6 years trying to get answers and finally got a diagnosis and other sister never says a word over the years about any symptoms falls on pavement and starts feeling burning nerve pain and got a dignosis within two weeks. I am not saying i want to have it. I just want to know what is wrong so i can enjoy life.

I am certainly with you, laurrose, when you say, "I just want to know what is wrong so I can enjoy life." All of us here want to get our lives back!

Hmmm… Thinking about your second sister to get the MS diagnosis, I think there could be a B12 problem there: She fell on the pavement and started feeling the burning nerve pain – balance problems, falling, gait disturbances, burning/pain can all be symptoms of B12 deficiency.

If a doctor didn't screen for B12 problem at that time, how would anyone know what was really going on? In the video I mentioned earlier @25:50 the statement appears on the screen: It is medically negligent not to rule out B12 malabsorption in symptomatic patients.

There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B 12 deficiencies and patients went on to develop irreversible neurologic damage.

I am not saying that you and your sisters don't have MS; I am saying that this B12 possibility should have been/should be considered and investigated.

[laurrose]

I think its all interesting. I take vit b suppliments because my nerve pain is so bad and restricting my arm neck and trunk movements but i can still ask him to test me for a deficiency. I wonder if my other sister could poss have vit b defic. She stays away from all nightshade foods and gluten. I am just noticing with me for instant i started going to my new pain specialist last july...i have had three inject no relief a nerve test tgat shows c6 and c7 nerve damage and now these last few months i am having swallow issues slurred speech at times and big mobility issues with my arms and hands. Its interfering with my writing. Need help with any thing that requires arms. Like brushing hair...i have a dr appt may 5 so im hoping to get more answers since weve tested my neck a ton. And the nerve pain continues to escalate and get worse. I can no longer work at all. I am very frustrated because instead of veing stronger a year later i have even more debilitating things to add to the pile.

[lyndacarol]

I think its all interesting. I take vit b suppliments because my nerve pain is so bad and restricting my arm neck and trunk movements but i can still ask him to test me for a deficiency. I wonder if my other sister could poss have vit b defic. She stays away from all nightshade foods and gluten. I am just noticing with me for instant i started going to my new pain specialist last july...i have had three inject no relief a nerve test tgat shows c6 and c7 nerve damage and now these last few months i am having swallow issues slurred speech at times and big mobility issues with my arms and hands. Its interfering with my writing. Need help with any thing that requires arms. Like brushing hair...i have a dr appt may 5 so im hoping to get more answers since weve tested my neck a ton. And the nerve pain continues to escalate and get worse. I can no longer work at all. I am very frustrated because instead of veing stronger a year later i have even more debilitating things to add to the pile.

Taking vitamin B supplements before any testing will skew the results – they will be unreliable. The outdated "serum B12" test is considered by many experts especially unreliable. I am unsure if the newer, more accurate test called the "HoloTc" would be skewed by vitamin supplements – this is something to discuss with your doctor (The HoloTc may not even be available in your area yet.). OR consider simply stopping your vitamin B supplements at least two weeks before any testing.

A couple other possibilities: #1 a homocysteine (Hcy) test; #2 a methylmalonic acid (MMA) test. These two substances will be high if the B12 level is low.

Difficulty swallowing is called "dysphasia" and can also be a symptom of B12 deficiency. Slurred speech can be another sign; also, difficulty writing.

As for your oldest sister – she could well have a B12 deficiency, if it runs in your family… For some people, gluten damages the intestines and interferes with the absorption of B12 and other nutrients. Some people are even saying that one herbicide (Roundup) sprayed on wheat (as well as barley and oats) binds with minerals, making them impossible for us to absorb and use. Whether it is intestinal damage by gluten or a chemical sprayed on wheat – it may be important for your sister to be careful with her diet.

If your doctor recommends a B12 supplement (tablet dissolved under the tongue) or even B12 injections, the information I have read suggests that the "methyl" form (called methylcobalamin or methyl B12) is easily used by the body. (The B12 shots given in doctors' offices in the US are the "cyano" form which is cheaper and not easily absorbed by the body.)

[laurrose]

Thank you so much for all the information ill discuss it with my doctor and let you know. If its as simple as a b12 defficiency and i can know what to do to correct it so i dont feel so weak and my body will function normally i would love that. I am a single mom and this is very difficult