Proving you have MS over and over...

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Have you experience the same problem?

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Total votes : 2

Proving you have MS over and over...

Postby Anikki » Sun Jun 15, 2014 12:28 pm

I was Dx with MS on July 2001, It took 10 yrs to figure it out ..... I had alot a doctors tell me that they believe that the pain and problems were all in my head... I was vry discouraged cuz I knew that something was wrong with me but I just didnt know what it was.... One day my husband suggested that it was MS and I was in denial cuz MS scared me.... I have 2 lesions on my brain post and lateral.... My husband was taking care of me and on May 2009 ... my husband was Dx with liposarcoma and I put my own health on hold to care for him and recently he pass on Jan. 2014 and I lost medical and all his income.... and now I have no money to cover any medical coverage.... I cant get any help from Social Security cuz they dont believe that my condition is severe enuff .... They think cuz i have moments when im in remission that I can work and there is nothing wrong with me .... I have to prove that my MS is severe enuff for help... I cant get any medical cuz I need to prove it but i need medical to prove it... I am starting to think that if i was back in my wheel chair that it would be enuff to prove it to them.... Im scared to be put in my chair again...its the only way to prove .... that MS doesnt go away... some MS comes and goes without any warning....

I need encouraging thoughts.... Please....
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Re: Proving you have MS over and over...

Postby lyndacarol » Sun Jun 15, 2014 1:30 pm

Anikki wrote:I was Dx with MS on July 2001, It took 10 yrs to figure it out ..... I had alot a doctors tell me that they believe that the pain and problems were all in my head... I was vry discouraged cuz I knew that something was wrong with me but I just didnt know what it was.... One day my husband suggested that it was MS and I was in denial cuz MS scared me.... I have 2 lesions on my brain post and lateral.... My husband was taking care of me and on May 2009 ... my husband was Dx with liposarcoma and I put my own health on hold to care for him and recently he pass on Jan. 2014 and I lost medical and all his income.... and now I have no money to cover any medical coverage.... I cant get any help from Social Security cuz they dont believe that my condition is severe enuff .... They think cuz i have moments when im in remission that I can work and there is nothing wrong with me .... I have to prove that my MS is severe enuff for help... I cant get any medical cuz I need to prove it but i need medical to prove it... I am starting to think that if i was back in my wheel chair that it would be enuff to prove it to them.... Im scared to be put in my chair again...its the only way to prove .... that MS doesnt go away... some MS comes and goes without any warning....

I need encouraging thoughts.... Please....

Welcome to ThisIsMS, Anikki. I am so glad you found us. Our hearts go out to you for all the sadness you have endured. We want to help by sharing our experiences, by offering our ideas, and by encouraging each other.

MS has the same symptoms as many other conditions; I now believe that many cases of MS (even my own) are actually B12 deficiency. Your diagnosis with MS in 2001 may have been a misdiagnosis – did any of your doctors conduct the testing to rule out a possible B12 deficiency? A person can develop a B12 deficiency at any time in life.

I highly recommend this 50-minute documentary featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab). "Everything You Want Your Doctor to Know about Vitamin B12"

http://www.youtube.com/watch?v=BvEizypoyO0

Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment
Visual Disturbances
Migraine
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders
Psychosis
Thoughts of Suicide


If this possibility was not ruled out in 2001, see your GP and request testing. Do not take any vitamin B supplements in at least the three days before the blood tests as doing so will skew the results. (The initial testing for B12 deficiency includes #1 serum B12 test, #2 serum folic acid test, #3 serum homocysteine test, and #4 either a serum or urinary methylmalonic acid test.) 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.

If you are found to have a B12 deficiency, it is easily and inexpensively treated.

We are always here to listen. You are in my prayers, Anikki
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Re: Proving you have MS over and over...

Postby Anikki » Tue Jun 17, 2014 9:35 am

Thanks for your info... I will look into my B12... My normal blood work came out normal...I had 45 vial of blood taking out to rule everything out... Doctor told me that most of it was between normal range and some were lower than normal.. My ANA is off the charts... Im still open to new thoughts on my Dx...

I dont understand why ppl dont believe when a doctor speaks that they speak the truth... Other ppl who arent doctors say that the doctor must be lying... That you can get other doctors to say the same thing its just wasting the government money instead of listening to the first doctor...

Im stuck in the middle waiting for another 10 years for the truth to come back out....
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Re: Proving you have MS over and over...

Postby HarryZ » Tue Jun 17, 2014 10:53 am

Anikki,

So sorry to hear of all the problems you have had with your health.

I don't know where you live but have you had the opportunity to be seen at a MS Clinic which specializes in trying to diagnose the disease? I have heard many stories about people who see a family doctor or even a neurologist and don't get a proper diagnoses. They are not necessarily up on the latest information when it comes to MS and that can be a problem for you.

Now you have had a huge amount of blood work done and they have not found anything. Problem with MS is that there really isn't a blood test that is conclusive for diagnosing it. In many cases it takes an MRI, blood work, a spinal tap and physical exam to determine if you indeed have MS. And even that does not guarantee a diagnosis.

I sure hope you get some answers soon. Good luck.
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Re: Proving you have MS over and over...

Postby Wondering » Tue Jun 17, 2014 11:29 am

HarryZ

Just wanted to tell you that I look forward to your posts. Being someone that lived with (your wife) MS for many years, I always look forward to your input on this forum

I am undiagnosed but truly believe that your input and wealth of knowledge are invaluable.

Thanks for being such a support.

Cathy from Toronto
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Re: Proving you have MS over and over...

Postby HarryZ » Tue Jun 17, 2014 11:50 am

Wondering wrote:HarryZ

Just wanted to tell you that I look forward to your posts. Being someone that lived with (your wife) MS for many years, I always look forward to your input on this forum

I am undiagnosed but truly believe that your input and wealth of knowledge are invaluable.

Thanks for being such a support.

Cathy from Toronto


Cathy,

Thank you for the kind words, they are appreciated.

Spent 32 years with my wife who had MS when we were married and prior to that 10 years helping an uncle who had MS. Have certainly seen a lot of water go under the bridge when it comes to this disease. Sure wish they had better treatments after all the research that has been done.

BTW, I spent 29 years in Toronto before finally leaving.

Harry
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Re: Proving you have MS over and over...

Postby Wondering » Tue Jun 17, 2014 12:10 pm

HarryZ

Im actually north of Toronto.....may I ask, did your wife have vision problems? What were her first symptoms? Sorry if this has already been posted somewhere!
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Re: Proving you have MS over and over...

Postby HarryZ » Tue Jun 17, 2014 1:04 pm

Wondering wrote:HarryZ

Im actually north of Toronto.....may I ask, did your wife have vision problems? What were her first symptoms? Sorry if this has already been posted somewhere!


I'll PM you so not to interfere with the thread.

Harry
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Re: Proving you have MS over and over...

Postby Anikki » Wed Jun 18, 2014 6:24 pm

My ANA is too high.... its off the chart... I have been Dx with MS by my doctor had several Spinal Taps .... MRI with and without contrast.. of brain... I have two lesions on my brain... I have a Dx.. that's not the issue... my issue is that my husband died and I lost my medical insurance but....social security and welfare says they dont believe my doctor's Dx... they arent doctors... I cant understand that ppl without a degree can tell a doctor he is a lier.... My doctor already determined my diagnosis... I have been disabled since July 2001....

The problem isnt with the Dx its with the ppl who arent doctors telling my doctor he is stupid and telling me that my MS is like an infection take antibiotics and it goes away... That MS is something that goes away...and comes back... That being stuck in a wheel chair is the best place to be in.....(not..) I wish ppl without a degree would let the doctor do his job... instead of interfering...
Last edited by Anikki on Thu Jun 19, 2014 3:28 pm, edited 1 time in total.
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Re: Proving you have MS over and over...

Postby HarryZ » Wed Jun 18, 2014 7:09 pm

The problem isnt with the Dx its with the ppl who arent doctors telling my doctor he is stupid and telling me that my MS is like an infection take antibiotics and it goes away... That MS is something that goes away... That being stuck in a wheel chair is the best place to be in..... I wish ppl without a degree would let the doctor do his job... insteadof interfering...


It sounds like you should seek legal advice on this matter. Although you may not have the funds immediately to do this some legal firms can make arrangements to pay them later. There appears to be something going on here that doesn't make sense and it may just take a lawyer to find out what it is. Good luck.
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Re: Proving you have MS over and over...

Postby Anikki » Thu Jun 19, 2014 3:27 pm

Thanks HarryZ... I am looking into someone helping me out...
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