MS Symtpms for 12 Years, Clear MRIs & LP

[mcg99]

I am a 32-year old female, and have been having MS-like symptoms for 12 years. They started off mild, as tingling and numbness in a few fingertips, a few toes, and a mild l'hermittes sign, which re-occurred annually. I have had six sets of MRIs of brain and spine at 2-year (and now yearly) intervals--all scans have been clear. My LP, which I had this past January, was clear, as well. Two years ago, my symptoms worsened, and now I have sensory symptoms often, as well as crushing fatigue that comes and goes.

I have seen two excellent MS Specialists, both of whom believe I have "mild" or "benign" MS. Neither of them advocate treating me with interferons or Copaxone, as they believe the side effects will make me feel worse than I already do. Both neurologists have speculated that they believe I will stay mild "forever," due to the history of my symptoms. I am very scared about slowly losing myelin and not doing anything about it--I do know people with MS who were mild for many years, only to later suffer a disabling attack. Plus, I am getting worse slowly.

Do you think I should be on meds?
Do you agree with my specialist's predictions that wills stay mild, or do you find this approach a bit reckless?
Thank you so much for your time.

[tory2457]

If I may offer what I've experience personally:

I do have a MS diagnosis...for 20 yrs.

I began to read and educate myself regarding the similarities between MS/Lyme.

I then sought out a "lyme literate doctor". He tested me for things like full blood work up, Western Blot, and MRI's.

I am now treating with antibiotics.

Although I tested negative on my Western Blot per CDC criteria, I have numerous bands that are both PosiTive and IND...

Lyme disease just like MS is a Clinical Diagnosis...!!!!!

I would advise all to read and get educated about lyme and how it mimics all kinds of diseases,,,MS, Fibromyalia to name a few.

The best,
tory

[JCmcc]

I-100% agree.

[wifeataloss]

For SEVERAL years (and I can't stress the SEVERAL enough) my husband has been having bizarre neurological symptoms.  They began when we were living in Texas while he was attending seminary.  Things have progressed and worsed over the years and we seem to constantly get nowhere with family doc, neurologist, rheumatologist, etc.  I am going to list a short summary of the issues and explain what we have been told.  If anyone can point me in a direction PLEASE let me know.

1) diagnosed with Fibromyalgia because of consistent body pain
2) began having severe migraines
3) later during the time of a migraine, his right I would close and the right side of his mouth droop (just like Bell's Palsy).  
4) after a while of these episodes, ENTIRE right side of body would go numb.  Sometimes it will last a day, sometimes a week, sometimes MONTHS.
5) these episodes do sometimes occur immediately after ejaculation.

Family practice doctor has done CT, MRI, Carotid Artery studies, lumbar punctures, etc.  All show negative for most major disease.

FP Dr says now "Hemiplegic Migraines" and it is impossible to tell when they are going to come on, cannot treat the hemiparesis once it begins, etc.  Neuro says it's not that but doesn't say what it is.

My thoughts, based on HOURS of reading are: MS, Lupus, ALS, or Myesthenia Gravis.  His maternal grandfather did have MG.  

My husband is actually in the hospital right now with the symptoms.  The doctor ordered yet ANOTHER MRI and carotid study.  I found a blood test that can be done for MG so I am going to request that they do it while he is in.  I will be checking this board tonight and tomorrow so if ANYONE has ANY ideas, similarities, places to begin, etc. PLEASE let me know.  As my login says I am a wifeataloss!!!!  We are going on 9 years of this and basically getting told NOTHING!  And we haven't even used the same doctors this entire time!

[JCmcc]

LDN's effects are more exstensive than the prior. I have seen many cases where it takes complete control of the body. It does not work for every patient.

I hope that this has been helpful.

JCmcc.

[JCmcc]

I am not responding to you as a physician and please be advised that I do not represent a professional opinion nor do I represent MEDHELP.ORG

With that said. Your husbands symptoms are consistent with Multiple Sclerosis, however, studies indicate the he does not have MS.

I am more apt to consider a viral infection, perhaps a small and nearly benign (in comparison to others) acute transverse myelitis induced by a tick borne illness such as the much more common than realized Lyme disease. He too may have MG.

I understand that this is a terrifying process but you need also to be aware that certain poisons, such as arsanic poisoning, can cause all of the symptoms your husband is having. Such a poisoning is highly unlikely. I have, however, read of cases where such symptoms came upon a patient, baffled physicians, and nearly lost their lives until such tests for poisons were taken.

The point is: until all facts are in, an answer, is simply a guessing game. You are in line with all of your differential possibilities. I would go to a major academic center for evaluation.

I hope that this has been helpful and good luck to you two.

JCmcc.

[mcg99]

Hi JCmcc, thanks for the info....I have actually researched LDN extensively, and have been thinking about trying it for some time. My neuro even said she'd presribe it, though reluctantly, because she says there's no hard proof it works for MS. However, I am in touch with many people with MS who have had much success with LDN.

Most say the problems LDN has addressed, however, have been bladder issues and spasticity, not sensory symptoms or fatigue, which are my main problems.

You say it helped your sensory symptoms? This is encouraging. Thanks!

Also: to the woman who asked if I had kids--I haven't, and don't plan to, so that question doesn't factor into my treatment decisions. I do know, however, that post-birth is a frequent time for MS (and other autoimmune disease) flare-ups to occur. Good luck!