33 year old male with RRMS

[Sedi]

Hello everyone!!

My name is Bryan and I live in Alaska. I figured I would share my story with people and also talk to others with MS so i have people that would understand and also share what I go through. Every day I experience pain, headaches, dizziness, you name it. Have fell down a flight of stairs last year because of weekness and dizziness. But I'm trucking along...

I apologize ahead of time for the long read.

I was diagnosed in July 2013. I first noticed issues I was having in December 2012. Woke up in a Sunday and went to put a load of laundry in the wash when I realized I was having trouble seeing. So sent to the doctor and he said I had nystagmus (eyes don't focus on the same point). I had blurred double vision to the point where I couldn't see 2 feet in front of me. I had to wear an eye patch just to be able to see. It lasted for a month. At the same time my left hand went numb. He sent me in for an MRI which is when I was first diagnosed with MS.

First neurologist:
Finally say him in February 2013. He didn't do anything other than put me on capaxone. He wasn't very informative nor did he seem to give a crap. So June 2013 I switched neurologists.

Second neurologist:
He finally did a spinal tap I'm July 3013 and confirmed that yes I indeed have MS. Also after looking at my MRI he said I have had it for a few years. It wasn't until he started asking if I had experienced certain things before that I realized he was right. He changed my medication to tecfidera because I wasn't doing well with capaxone. Well in regards to my hand he did a nerve conduction study on my arm and said it was carpel tunnel and referred me to a surgeon in November 2013. Only to hear the neurologist was wrong and that it wasn't carpel. When I told the neurologist that he said my nerve conduction study numbers showed mild to moderate carpel and referred me to another surgeon in April 2013. That surgeon also told me he was wrong because all the numbers were well within range and he went over it with me and explained it. So I called my neurologist and was told that he didn't say I had carpel tunnel. I requested a copy of my records to compare with what I had kept when leaving all the visits only to find out the records were changed. When I asked them about it they blamed server malfunction. I won't be going back to that neurologist.

I have been referred to another neurologist which I see end of July. My next MRI is tomorrow.

Well, I know that was a lot to read. If anyone has any questions, wants to talk about where I live or what I do, or penguins... Penguins are cool...messaged or ask.

Hope everyone's day is a great one!!!

[lyndacarol]

...I was diagnosed in July 2013. I first noticed issues I was having in December 2012. Woke up in a Sunday and went to put a load of laundry in the wash when I realized I was having trouble seeing. So sent to the doctor and he said I had nystagmus (eyes don't focus on the same point). I had blurred double vision to the point where I couldn't see 2 feet in front of me. I had to wear an eye patch just to be able to see. It lasted for a month. At the same time my left hand went numb. He sent me in for an MRI which is when I was first diagnosed with MS.

First neurologist:
Finally say him in February 2013. He didn't do anything other than put me on capaxone. He wasn't very informative nor did he seem to give a crap. So June 2013 I switched neurologists.

Second neurologist:
He finally did a spinal tap I'm July 3013 and confirmed that yes I indeed have MS. Also after looking at my MRI he said I have had it for a few years. It wasn't until he started asking if I had experienced certain things before that I realized he was right. He changed my medication to tecfidera because I wasn't doing well with capaxone. Well in regards to my hand he did a nerve conduction study on my arm and said it was carpel tunnel and referred me to a surgeon in November 2013. Only to hear the neurologist was wrong and that it wasn't carpel. When I told the neurologist that he said my nerve conduction study numbers showed mild to moderate carpel and referred me to another surgeon in April 2013. That surgeon also told me he was wrong because all the numbers were well within range and he went over it with me and explained it. So I called my neurologist and was told that he didn't say I had carpel tunnel. I requested a copy of my records to compare with what I had kept when leaving all the visits only to find out the records were changed. When I asked them about it they blamed server malfunction. I won't be going back to that neurologist.

I have been referred to another neurologist which I see end of July. My next MRI is tomorrow. ...

Welcome to ThisIsMS, Bryan. We certainly do understand and appreciate your willingness to share your story.

You saw neurologist #1 when your left hand was numb? Numbness/tingling in the fingers/hands/toes/feet is the textbook definition of "peripheral neuropathy." This is a common symptom in MANY conditions. To investigate the cause of peripheral neuropathy, the University of Chicago suggests 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

Please note that the first testing is to rule out a possible vitamin B12 deficiency. Your symptoms are the same as those of a B12 deficiency. It appears to me that NONE of your doctors have tested for this.

Peripheral neuropathy is the most common symptom of a B12 deficiency. I urge you to get and read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally Pacholok, RN, BSN, and Jeffrey Stuart, D.O. Ask your GP (specialist is not necessary) or even your new neurologist to begin testing for a B12 deficiency (initial testing usually includes #1 a serum B12 test, #2 a serum folic acid test, #3 a serum homocysteine test, and #4 either a serum or urinary methylmalonic acid test (Pacholok and Stuart think the urinary is more accurate.). By the way, if a CBC is done, a high MCV (mean corpuscular volume) result also indicates a possible B12 deficiency.

I think it is entirely possible you have been misdiagnosed with MS. (I have no medical background.)

Pacholok and Stuart think it borders on malpractice if a doctor does NOT do B12 testing with a patient who presents with neurological symptoms.

Good luck with neuro #3!

[want2bike]

The neuro's are only good if you choose to do the drugs. These guys are a leading cause of death with the drugs they provide. Get all the information you can and make it your decision as to how you want to treat your disease. Many do not use the drugs and choose to go with nutrition. There is a study showing the drugs make it worse. Dr. Bergman gives advice on how to treat MS. Why not try his advice for 60 days and see if you get better.





http://www.healingdaily.com/Doctors-Are ... the-US.htm

[ElliotB]

Hello Bryan.

I am from Florida, quite a long distance away from you! I will try to send some sunshine your way!!!

It sounds like you are going through a rough time right now. Be patient. You will feel better in time. I was in terrible shape a year ago and am doing fantastic now. I have made major changes to my life with regard to diet, exercise, supplements and lifestyle. And I proudly take Copaxone! Again, you will feel better soon, just be patient and do everything possible to help yourself. There is a lot of self help information available on this site.

[Sedi]

Thanks for the good advice. I was checked a year ago by my GP for B12 deficiency and i was good. I am going in this week to do another one as well as all my normal yearly laps. I will take a look at these links.

Thanks for the welcome. I really appreciate it!!