MS diagnosis and questions from a caretaker and friend

[tienLi]

I have a few questions related to a close friend who has been recently diagnosed with MS.
I would appreciate any help or feedback from you all.

My friend is a bright and smart 32 year old. In her early 20's she was diagnosed with Lyme. As was her entire family. None of them had the bullseye rash. The living environment where she grew up as a child was one of disarray and I have been told there were infestations of the highest level of fleas, lice, roaches, and overall filth. Anyway, the Lyme doctor she went to was a DO and the lab used for testing was called igenex. She was given antibiotics for a few years and spent an entire year so sick she had to stay home. She was also given some type of aids medication (she does not have aids) which made her worse. She couldn't afford anything else and had 50k plus in medical bills. She stopped all of the treatment and then ultimately was able to return to "normal."

Fast forward to 6 months ago. She would tell me she would have to pull over while driving because her legs would go numb. She'd fall over a lot. She couldn't feel her right arm. Her vision would go away for a minute then return.  She felt sometimes like she was getting electric shocks, muscle spasms, twitches etc. She is also very thin and underweight. I was so horrified that I suggested she see my doctor. They ran a million blood tests and ordered a brain MRI. The MRI results were of numerous lesions and she was then referred to an MS neurologist. More blood tests were ordered and a spine MRI. Again, full of lesions. They said the lesions were too numerous to count after a certain point. Then she went through evoked potentials and neuropsychologist testing. Diagnosis: RRMS.

She has now been very thoroughly diagnosed with MS. The blood work ruled everything else out. Including Lyme. However, one test that is odd was a CD57 test and her number was 18. (Apparently that is a very low number.)The neurologist said there was no evidence she had ever Lyme. My friend is still not convinced. She is scheduled to begin Tecfidera as soon as it arrives and wants to make sure it's the correct thing to.

As an interesting side note, her father was in a nursing home in his late 40's with severe mental decline. He was diagnosed with MS some point down the road.  He had previously been diagnosed by the DO as having severe Lyme.  Her sisters both complain of the "slow brain" feeling. I found one genetic brain disorder and MS Mimicker called HDLS. It's probably not that but this genetic component is baffling.

Is there anything else she should do?
Is there anything else she could have?
Tecfidera, correct treatment?
Also, her symptoms are always there and have been. Seems more like a further advanced form of MS since they do not relapse and remit. ?

Sorry this is so long and I thank you for any feedback.
Very much appreciated.

[tienLi]

Thank you, Alex.
I appreciate all that you wrote.

Thanks also for explaining the inflammation vs nerve damage.

Tien Li

[HVAC]

It sounds like MS but I am not a doctor. I was not convinced so I got a second opinion from another MS Specialist. The diagnose most people with RRMS at the beginning. Remission is tricky. For some people with MS they do not have a remission of all symptoms. There are two things with MS inflammation and nerve damage. With inflammation when the inflammation goes away so do the symptoms. You can have inflammation for even years. With nerve damage the symptom stays. Even a doctor sometimes can't say which is which at the beginning.

It is important to get on a drug like Tecfidera as soon as possible to slow progression.

The only thing else they could do is give her steroids to bring down inflammation but that is the doctor's call.

My good friend keeps telling me I have Lyme and not MS. My neurologist says no way do I have Lyme so I take his word for it. People are rarely mis diagnosed as having MS.

Taking care of her over all health is important. I started exercising and improved my diet. I do neither to cure MS just so I do not have other illnesses if I can help it.

Alex

Alex