newbie with lots of questions - sorry!

angielov said...
Hello everyone,
I am so happy to find your forum. I need a little insight and apologize for what is probably redundant matters for you all. I have a series of questions. Expereincing some cognitive disturbances so I apologize for any spelling/grammar errors.

I am a 30 yr old female who has been experiencing MANY symptoms over the last years. I recieved an MRI a week ago which my doctor (who I am new to) decided should be evaluated by a neurologist. This neurologist told me that I have inflammation in my brain causing lesions. I don't know how many but I know at least four. I am having a lumbar puncture next week and more blood work done. He told me that he did not want to make a diagnosis until those tests came back however he seemed like he already knew what it was. He did mention MS and Lupus. This is where I am fuzzy, my pastor was in the room with me and he thought he heard the doc say that there are "viruses" that can cross over from the blood stream into brain matter and cause these lesions. Has anyone evr heard of such a thing, or did he not hear him correctly?

Second question, I have many symptoms. Numbness, burning, tingling, a couple episodes of facial paralyssis and numbess ( lasting a day) dizziness, loss of vision, cool tinging feelings on my back. Most recently this week is no feeling during intercourse and a bladder accident today. I sometimes limp (my left leg feels weak) but not always. I feel like I've had about 4 or so "flare-ups" as you all call them within the last couple years. I always seem to have very low-grade syptoms between flare-up but nothing real bad. This time it's really bad - I can't even think straight. Can't drive very dizzy. Does any one know if the number of lesions corresponds to the number of syptoms - I heard that and it doens't seem right. Maybe I don't even have MS, but it really seems that way. Do my symtoms seem any more severe or rapidly onsetting then normal?
any thoughts would help a bunch!!

There are many diseases and disorder that look alike from the outside, and some of which can cause lesions (the inflammation) in your brain.  The doctor is quite correct to be cautious and not make any sort of definite diagnosis until all the tests are complete, he has results from them all, and has examined you thoroughly.

MS does cause lesions in the brain and sometimes on the spinal cord.  So can Lupus, which is more identified as a rheumatological disease, like rheumatoid arthritis.  And your doctor was talking about viruses that can cross over from the blood stream into the brain matter and cause lesions -- he is exactly right.  Such infections (a virus is like an infection) of the central nervous system do occur. And there are even bacteria that can cause problems, like the bacteria associated with Lyme disease. 

So all these things have to be looked for, which is what the doctor is doing, through having you submit to an MRI, and then the blood tests, and the spinal tap.  These last two - the blood tests and spinal tap -- are useful to see if in fact there is some infection, either viral or bacterial, causing your problems. There are no specific blood tests for MS, but if something infectious is wrong, it'll show up in the blood.  There is a specific protein that they look for in spinal fluid to identify possible MS, but again, there are other "ingredients" in the spinal fluid that might point to some other disorder.

Your symptoms are reminiscent of MS, to be sure.  But until all the other stuff is ruled out, he's not ready to state that definitively.

You asked about the number of lesions: the number of lesions don't necessarily correlate to the number or severity of symptoms. Some folks can have lots of lesions and little disabiity; others can have just a few and serious disability.  You also asked about your symptoms. It sounds like you've been having problems for several years now, and it's been recently that things seem to have intensified. This seems also a pretty typical pattern for MS.  Again, some folks can rock along for years with no particular disability, or only minor things going on. Other folks might have a severe exacerbation (or flare) and be significantly disabled early on.  There is no way to determine that.

It's good that you don't have to wait too long to get the rest of the tests done..and then it will be a few days, or a couple of weeks, to get those results.  Do come back and ask more questions, and tell us what happens in your follow-up visit.

Wecome to the board! I"m glad u've found us and hope u'll find the comfort and support we've all found. Please feel free to ask any questions u may have and we'll all do our best to give u the answers u'r looking for from our own experiences.

U certainly do have many symptoms, some of which i want to touch on directly. I am not dx'd and can't give u any personal experience on spinal taps or lesions...didn't have a spinal and no lesions (thank goodness!). However, many of our symptoms are similar. Everyone has done a great job explaining things to u and i really don't think i can add anymore explaination to that, but wanted to say u'r not alone. I have the numbness, tingling, dizziness, balance probs, jerking, weak (jello) legs, heavy feeling in limbs or over body (usually coincides with fatigue), FATIGUE!!!, vibrating feeling, trembling in my arm, MEMORY probs, speech probs at times, stinging feeling or crawling feeling on my skin, minor and very infrequent burning feeling...and the list goes onnn. The one thing u mentioned that no one else here has and i've noticed too is no feeling during intercourse. I've had a hysterectomy and have been writing it off to early menopause, but have suspected more than that for a long time now. The reason is that all i've read on menopause doesn't describe it in the way it feels. It's as if it's just a feeling of pressure and no contact sensation at all. Almost as if it's not part of u'r body. That's very disturbing to say the least! I hope u'rs goes and stays gone. Mine comes and goes just as with other numbness.

The low grade symptoms u refer to are prob residual symptoms. With ms, between flares u can have residual symptoms...left-overs if u will of the flare u just had. They may go away over time and not show up again til the next flare or maybe never...OR...u may not have residual symptoms at all between some flares. MS is a funky thing...u never know what u'r gonna get. Let's hope and pray it's not MS and whatever it is will be treatable and cureable. Please do let us know what the test results yield and how u'r doing.

One other note...as u'r going thru all this testing...get copies of the results and copies of the mri films as well. These can be invaluable to u later on if a dx is not made quickly. Also, u may want to start now in documenting all u'r symptoms. Just keep a journal of how things started for u and how they progress. U'll want to note any changes in onset of symptoms as well as any new symptoms and their onset patterns. That can be very helpful in allowing the doc to follow u and see the things u see and he can't. It's also very theraputic. Please feel free to talk to any of us as u'd like and let us help u get thru this. Take good care.