To: Sharon, & Carole Re: MSPosted by Necee on 4/16/03 at 22:54 (116374)
What are the symptoms of MS, and also explain the MRI.
Re: To: Sharon, & Carole Re: MSSharon W on 4/17/03 at 09:22 (116399)
The best diagnostic tool that doctors have for MS is an MRI of the brain and spinal column -- on those tests they can see lesions that are characteristic of MS. Lower down on the page, in one of her responses to me, Marie wrote a really good description of these lesions and of what all is involved in being diagnosed with MS.
Early symptoms of MS most often include:
Problems with walking
Strange sensations like 'pins and needles,' tingling, numbness
Vision problems and pain behind the eye(s)
Other symptoms may be:
loss of memory and mental acuity
a sudden attack of paralysis
Later primary symptoms include:
problems with bladder and bowel function (and control)
loss of vision
losing your balance
MS can also cause fatigue, depression, dizziness and vertigo, headache, hearing problems, problems with swallowing, itching, seizures, spasticity, sexual problems, and mood swings. Of course, most people don't have ALL of these symptoms... just some of them. So you can see where it would be really hard for doctors to recognize and diagnose.
(The above info is according to the MS Sourcebook, on the National Multiple Sclerosis Society website)
Hope this is helpful.
Re: OOPS - the post above should have been addressed to Necee!Sharon W on 4/17/03 at 09:25 (116400)
Re: To: Sharon, & Carole Re: MSCarole C in NOLA on 4/17/03 at 12:45 (116416)
Sharon's quotes from the MS society website about cover it. There's another quote from their website that I'd like to include, though. It describes exactly WHAT symptoms are diagnostic of MS.
' 1. Objective evidence of at least two areas of myelin loss, or demyelinating lesions, 'separated in time and space.' This means lesions have occurred in different places within the brain, spinal cord, or optic nerve at different points in time.
2. All other diseases that can cause similar neurologic symptoms have been objectively ruled out.'
Necee, my understanding of what this means is that the damage to the brain and spinal cord jumps around to different places ('at least two areas of myelin loss, or demyelinating lesions') at different times ('separated in time and space'). Relapsing and remitting neurological symptoms of different kinds are diagnostic of MS.
For example, one month you can be blind in one eye but otherwise feeling great. A few months later, you can see but your right leg feels numb. The next year you have spastic paralysis of your left arm.
The bad thing about MS is that it's unpredictable.
The good thing about MS is that it's unpredictable. LOL
Re: Thanks, Carole...Sharon W on 4/17/03 at 13:24 (116424)
I hadn't seen that info about what is diagnostic of MS. It's interesting.
Re: you're welcome... :)Carole C in NOLA on 4/17/03 at 14:37 (116428)
It's important (in my opinion) to get BOTH an absolutely irrefutable clinical diagnosis and MRI results consistent with MS before accepting an MS diagnosis. Otherwise it's not considered conclusive and the diagnosis may be premature. Certain other conditions can cause an MRI with a whole lot of reflectivity consistent with even the most severe MS. The person with such an MRI may never develop symptoms diagnostic of MS. Or, they might.
MS sometimes is a 'wastebasket disease', because an isolated symptom COULD be early MS. It also might not be. What doctors often try to do is to eliminate any more curable problems first, which is a good idea. With any luck insurance will cover all that.
With MS, as with life, nothing is certain (or at least very little is).
Re: you're welcome... :)Sharon W on 4/17/03 at 15:16 (116433)
What I mostly wanted to know is whether an MRI of the brain will reliably RULE OUT multiple sclerosis. I can't seem to find that info anywhere, and I've been looking.
That's what we're doing right now, trying to figure out (1) whether I really DO have peripheral neuropathy, and that means trying to rule out other things (2) trying to identify the CAUSE of my peripheral neuropathy, if that's really what I have. MS and PN have MANY of the same symptoms -- and MS and CIDP are so similar that they are sometimes (far too often) mistaken for each other.
Most of the possible causes for my symptoms COULD be treated -- even MS -- although some problems are more easily treated than others. (ALL of them can be more successfully treated if that treatment is started while the problem is in the very EARLY stages and not delayed until the problem gets worse.)
But without an accurate diagnosis that correctly identifies the CAUSE of these crazy symptoms, there's no way to stop it from getting worse -- all they can do is give meds to control pain. That's why I have to do whatever it takes to get a complete and accurate diagnosis, AS SOON AS POSSIBLE.
I agree with you, Carole, I'm glad there is a precise set of diagnostic criteria for MS because I certainly wouldn't want to be MISTAKENLY labelled with MS when my problem is really something else!
Re: you're welcome... :)Carole C in NOLA on 4/17/03 at 18:00 (116444)
If you don't have a formal clinical diagnosis of MS (based on the stuff quoted previously; neurological symptoms separated in time and space), and if your MRI comes out negative, then I suspect you probably can rule out MS for now. I'm sure your doctor will let you know. But whatever he says, I sure hope for the best for you, Sharon!
Re: you're welcome... :)Sharon W on 4/17/03 at 19:16 (116451)
It's good to know that I can probably rule out MS.
I'm a little confused, though, #-o as to how they define 'neurological symptoms separated in time'. Can they tell from an MRI whether the lesions are old or new? I have nerve problems in my feet, and (more recently) in my hands, which definitely get better and then get worse again, then better then worse, but they don't ever go away completely. That pattern isn't typical for most types of peripheral neuropathy -- PN tends to slowly but rather consistently get worse and worse until (and unless) the cause of the problem is successfully treated. :-/ With MS would those symptoms go away COMPLETELY, or might part of the problem always be there? :-?
Sorry, I know you probably can't answer that.
My problem is, I've been very disappointed in the local neurologists I've been sent to for this. They both examined me, to some extent, but they obviously weren't interested in treating me while my problem is just beginning (beyond increasing the amount of Neurontin I take for nerve pain). And the truth is, I wouldn't trust them to take charge of my care anyway; I don't have much confidence in their opinions. They both called my problem 'idiopathic peripheral neuropathy' and seemed to think that until the problem gets worse there's no point in even TRYING to identify its cause. :( But I know that isn't true!! x-( I don't know if they have this attitude because they're older men and either don't trust all the new treatments or aren't very familiar with them, or WHAT their problem is, 8-(PIPE) but almost ANY type of PN can be treated IF the cause is identified early.
I feel like I have no choice but to try to figure this out for myself, with the help of my family doctor (who I DO trust, but she isn't really all that expert in these things). That's definitely not what I would WANT; it's a very lonely and insecure position to be in. But until I find a specialist that my insurance will pay for who I can have confidence in, someone I think is really trying to sort this all out and find me an accurate diagnosis, I just don't see what else I can do. :((
Sorry to get long-winded again... and thanks again, Carole, for your help!
Re: you're welcome... :)Carole C in NOLA on 4/17/03 at 21:11 (116462)
What they mean by 'symptoms separated in time', is that the patient has a history of neurological problems such as numbness, paralysis, and blindness that come and go. These neurological symptoms are the basis of a clinical diagnosis.
They try to track the actual progress of lesions with MRI tests too, but years can take place between MRI's so that is a limitation. Also the symptoms don't always necessarily correspond to the lesions very well.
Sharon, I honestly think the best thing I can suggest is also probably impossible, and that's to not worry until your doctors have reached a conclusive diagnosis. Something TERRIFIC about your situation is that you have a family doctor that you trust.
Here's a suggestion which you can take or leave. Get all your neurology records and test results copied and take them to your family doctor. If she recommends further testing or consulting neurologists or whatever, let her recommend a neurologist that SHE knows is good. Basically, let her take part by guiding you, just as she would guide her own sister or daughter in a similar situation. That will mean extra doctor appointments, but having someone you trust involved in this every step of the way would make it worth that!!! Besides, she would know and tell you if seeing a specialist in another specialty is advisable. She would also be a help in deciding when you've had enough tests and so on, when it gets to that point.
Re: Sharon....answersmarie on 4/17/03 at 21:22 (116464)
Ok I am going to take a stab at this. No they cn't tell how old a lesion is. Many people have some lesions in their brain as they get older. Some neuroligical reasons someone might have leisions:TIAs, Cocaine abuse, alcoholism, head injury, alzheimers and just plain old. MS also causes leisions. The main tests given to determine if someone has MS are: MRI of brain and spine showing lesions, spinal tap (must contain a high number of a certain kind of anti-bodies known to fight off auto-immune diseases), and optic neuritis. Neuros will not dx MS unless you two of those tests come out positive. Optic Neuritis being the most definitive. Aside from that they will want to rule out every possible disease known to mankind before they dx without the presence of optic neuritis. It took Terri Garr fourteen years. There is no hurry up dx with MS.
If you go to the National Association for Multiple Sclerosis site you will find a message board. There is a moderator on the board named 'Jazzgirl'.
She also has TTS. Feel free to ask her for advice. She is very knowledgable. She is the only MS person on the board with TTS and will respond quickly if you mention that you once had it.
I am thinking of you! I have been there....$15,000.00 later my docs decided I have had TIAs and possibly fibro.
Also thanks for thinking of my brother....I'm a bit worried this time.
Re: you're welcome... :)marie on 4/17/03 at 21:33 (116466)
Re: you're welcome... :)Sharon W on 4/17/03 at 21:37 (116467)
I am VERY glad to have a family doctor that I can trust!
However, the second neurologist I went to was the one my family doctor recommended. He did a very thorough (clinical) office exam but only partial nerve conduction tests. He didn't order any other tests whatsoever. He increased my Neurontin and said to come back in a year when I needed a new prescription. I don't have any confidence whatsoever that if I just patiently sat back and took my Neurontin and then went back to see him again next year, this neurologist would do anything next year (or the year after that, or the year after that...) besides scribble out another prescription for Neurontin. Even so, my PCP is probably right -- he probably IS the best neurologist in town.
Thanks for your input, Carole; I'll keep your words in mind.
Re: you're welcome... :)marie on 4/17/03 at 21:55 (116472)
Try locating a MS specialist on the MS board. My first neurologist was much like yours. The second one I went to was Dr. Mikol at the University of Michigan Medical Center. He is the head of the MS clinic. His examination was very different...from my first neuro and he had a personality. He took one look at my MRI and told me he thought my lesions were caused by TIAs. My first neuro never looked at my MRI he only went by the radiologist report....he scheduled a lumbar puncture based on that. Someone who has a history of TIAs should not have a lumbar puncture......that is why I was in such bad shape last fall. You may have to travel to find a MS neuro but you'll get the answers to your questions much quicker. Check the MS site...someone on the message board there WILL help you find a doc.
Re: you're welcome... :)Sharon W on 4/17/03 at 22:15 (116476)
I wish it were that simple. The only options really available to me are LOCAL ones, because that is what insurance will cover. We just couldn't afford to pay for all those tests without out of pocket.
The MS thing is just something my family doctor is investigating. She wants to be thorough, which I appreciate.
Another thing I appreciate is all your help, Marie. >:D<
Re: Sharon....answersCarole C in NOLA on 4/17/03 at 22:21 (116478)
They can tell how old a lesion is, by repeating the MRI at intervals. If a lesion appeared between 1990 and 1995, they's know it was about ten years old, for example. That's pretty much standard practice in MS, and luckily insurance companies pay for it routinely (with a specified number of years between MRI's) as a way of tracking the lesions.
You are so right that there are other reasons for lesions, and a few of them can even cause very severe lesions as can MS. So, one bad MRI is not a reason to worry, but it IS a reason to be sure to see a neurologist if any new neurological symptoms develop.
Re: you're welcome... :)Carole C in NOLA on 4/17/03 at 22:23 (116479)
Perhaps you might want to look into changing your insurance, if you have a choice of plans. It might take a few months before you could see doctors from elsewhere but MS is kind of a long term thing.
Re: Sharon....answersSharon W on 4/17/03 at 22:26 (116482)
I'll bet you are! My sister suddenly woke up blind one morning, and she had NO idea why... I was FRANTICALLY worried about her!
In my sister's case, the blindness turned out to be caused by sarcoidosis, an auto-immune disease that produces lots of teeny tiny tumors wherever it infests.
I do hope it all works out for your brother and he can get his vision back 100%.
Re: InsuranceNecee on 4/18/03 at 08:00 (116498)
I was reading everyones posts about MS, etc, insurance was mentioned which brought this thought to mind.......a friend went to the Dr last week to have a mole removed from her neck, she has no health ins, her minor surgery in the Drs office only cost $400 (cash). She said if she had ins it was going to cost $2,000.00. Her followup this Tues is costing her $120 (cash) instead of $200.
What's wrong with this picture? I get the very strong feeling that some Drs really stick it to the insurance companys.
Re: Sharon....answersmarie on 4/18/03 at 08:37 (116501)
Good point about tracking the age of lesions, Carole. I guess I was thinking about looking at a first MRI. They can determine some age of lesions by tracking them through repeated MRIs.
Re: Insurancemarie on 4/18/03 at 08:46 (116502)
I used to think the same thing. Now I just think they use insurance to balance out the difference between those that do and don't have insurance. Many insurance companies now have a policy about reasonable rates and fees. If a physcian charges something way out of the ballpark the insurance company will only reimberse for the reasonable rate. The folks with that kind of insurance are left to pay the difference. It is really up to the physican if they want to give price breaks to folks who have no insurance.
It's going to get tougher for the poor and elderly as medicaid is being cut. VA benefits are also being cut. I think it's ashame that in these times that those who sacraficed their time and energy to protect our country will go without.
I hope the economy picks up soon.
Re: InsuranceSharon W on 4/18/03 at 09:28 (116509)
If you're LUCKY, that's what happens! But, the whole thing breaks down really badly if you go out-of- (insurance) network, or out of area. With my insurance, IF it's a bona fide emergency or if they have pre-authorized me to see a doctor that isn't with the basic plan, they will only pay 80% of their reimbursable 'reasonable rate' (minus my co-pay). But, doctors will charge the full amount, and since they are not in-network they WON'T reduce the charges to what the insurance is willing to pay... So, I would end up being responsible for my co-pay, PLUS 20%, PLUS that BIG $$$ difference between what the doctor tries to charge my insurance and the 'reasonable rate' that they're actually willing to cover!! We've done this in the past, and it usually ends up we have to pay more than half of the doctor's FULL fee... and that means it problably costs US more than the insurance would have paid them if we'd been in-network in the first place. In fact, IF the doctor were be willing to reduce the costs to what they would normally get paid by the insurance company of an in-network patient, I would probably be BETTER oFF paying out of pocket for out-of-network care than involving our insurance company!
Re: you're welcome... :)Bev on 4/18/03 at 09:59 (116518)
Sharon, I don't know if you would like to or not, but you are welcome to talk to my daughter-in-law as she has MS. Her e-mail is not working now but my sons is and his is (email removed)
. I think she will try to answer any questions you may have if she can.
Have a very nice holiday :) Bev
Re: BevSharon W on 4/18/03 at 10:19 (116522)
Thanks, Bev! >:D<
I'll remember that. Right now I don't know whether I have MS or not, though -- I don't think so. My doctor just ordered the MRI to rule it out.
Re: SharonTammie on 4/18/03 at 10:44 (116523)
I tried reading a bit today and seen this thread and boy can I feel for you! Right before Christmas I was where you are My dr. wanted a mri of my brain and to see if I had any signs of MS as they thought I had some signs in my body. She ordered my MRI right before christmas and I remember crying and telling her I didnt want to know till after the holidays. She called me with a preasant and said all clear we can breathe now as it was done and they felt all was ok. But boy was the waiting hard.
I am wondering if all of us that have this nervey stuff have to be ruled out in the MS? Seems like most have this procedure done.What ever it turns out I sure will pray for the best for you ! Also one more thing, I know it is not my business, but like you I waited about insurance and waited to see Dr.s that I could and you know If could re do I would see the best and would care how much cost as my health is worth it. I waited and Now I am in trouble and I dont know what I have left to try. So If it is not to awful of me to say. Honey runnnnnnnn ooppsss no runnnnn umm driveeeeeeeeee to the best DR.s and get the best care you deserve! YES YOU DO DESERVE the best!
Re: Thanks, TammieSharon W on 4/18/03 at 11:21 (116528)
Re: you're welcome... :)Sharon W on 4/18/03 at 12:00 (116532)
'My first neuro never looked at my MRI he only went by the radiologist report....he scheduled a lumbar puncture based on that. Someone who has a history of TIAs should not have a lumbar puncture......that is why I was in such bad shape last fall.'
That's pretty scary stuff for me! :o I have a LONG history of high blood pressure, dating back to my teenage years, which finally led to me having a stent put in the main artery of my right kidney before it became completely blocked and that kidney had to be removed. [I have an anatomical anomaly with my kidneys; they have a weird shape and because of that, my renal artery makes a tight hairpin turn that put me at risk for blockage there.]
I'm rambling again. Anyway, as you probably know, high blood pressure and TIAs are often linked. When my last daughter was born, 19 years ago, they used a 'saddle block' type spinal anesthesia. When they injected my spine, I immediately went into some weird reflex loop, with my whole body contracting into fetal position and then relaxing, then contracting then relaxing... But it eventually stopped so they went on with the cesarean.
They told me not to lift my head for 24 hours after that C-section, and I don't think I ever did... but I still developed the most hideous headache of my life right after that procedure, and it lasted for over a WEEK! My head felt like somebody was repeatedly, rhythmically, endlessly, hitting my skull with a sledge hammer for about 10 days. After the first few days they tried another procedure I really didn't understand, but it involved a second puncture into the spinal fluid. The second procedure was supposed to stop the sledgehammer, but it didn't seem to help at all. :(
I know that the lumbar puncture is the appropriate test to check for CIDP (the type of auto-immune peripheral neuropathy that I think is the best match for my symptoms) OR for MS, if this brain MRI should turn out to show lesions after all. But, now I'm wondering if it would be safe for me to have the test?? :-s
Re: you're welcome... :)Carole C in NOLA on 4/18/03 at 12:49 (116537)
It's a pretty individual decision. I personally wouldn't have a lumbar puncture (and I don't even have your high blood pressure and so on). Some other people might not be as concerned.
If your doctor tells you he wants a lumbar puncture, ask him, 'Doctor, is this lumbar puncture going to result in a definitive diagnosis for me?' If he can't say 'Yes, most likely.', that will give you some more things to think about when you make your decision. Find out whether this is something that will benefit YOU, and not just something being done out of academic interest or CYA.
Re: Carole: lumbar punctureSharon W on 4/18/03 at 13:20 (116539)
Finding out the cause of my nerve problems is what would benefit me. But it makes sense, to do all the other tests FIRST, and wait to see if a lumbar puncture is absolutely necessary... Especially since I don't know what that awful reaction WAS or how it could be prevented from happening again. I will definitely have to tell that story to my doctor if she suggests I should have a lumbar puncture done.
Again, thanks for your input!
Re: Insurancemarie on 4/19/03 at 09:03 (116561)
Yikes! Healthcare is a mess.
Re: Carole: lumbar puncturemarie on 4/19/03 at 09:39 (116563)
Good Morning sharon!
Let's hope you don't have to have a lumbar puncture. I really feel you will be ok. I have a strong feeling on this but I could be wrong. Let us know as soon as you hear anything. It's not unusual to get a migrane headache and have to lie flat for 7-10 days. My headache lasted about 8 days. I memorized every crack in the ceiling of this old house. My husband was getting worried that I was making up a new honey-do list. If the headaches are severe they will order a blood patch.
A good neuro will ask you alot of questions about your medical history. The difference betwwen the first neuro I went to see and the second was night and day. I know I am not the only one who had problems with the first neuro as he has been politely asked to leave our medical clinic. He was also asked to leave the clinic my sister worked at (she is a nurse) in Ohio. I went to him because his practice was across the street from where I live. My orthopod suggested him...I was the first and last reference he gave to him. My family doctor has also quit referring patients to him.
Live and learn.
best wishes to you. Have a happy day!
Re: Carole: lumbar punctureSharon W on 4/19/03 at 09:48 (116566)
Good morning, Marie. (Are you having your coffee, too?)
Did you mean that it's not unusual to get a migraine after a lumbar puncture? Was that the main problem you had after your lumbar puncture, or was there something else? (I wouldn't want to go through having a headache like THAT again -- ever. Not if it could be avoided.)
Re: Sharon: lumbar puncture and migranesmarie on 4/20/03 at 19:21 (116633)
It's not unusual to get a migrane for anyone after a lumbar puncture. Some folks get a mild one and some severe. In the most severe cases the patient should call the doc immediately or go to an emergency room. You can get a blood patch. Can't explain what it is but most of the folks I talk with said it worked.
Folks who have a history of TIAs should not get a lumbar puncture because it can trigger a severe TIA to a full blown stroke. Spinal fluid and the brain are very closely connected. I probably had a major TIA which set off a neuropathy. Considering my doc now believes I have fibromyalgea as well, the combination wasn't good.
Sharon you told me that your doc suspects fibro. Keep in mind that folks with fibro tend to focus on their pain way too much because their pain is amplified. A chemical imbalance. Fibromyalgea, TIAs, ChronicFatigue Syndrome, Lyme Desease, TTS, neurapathy, are often mistaken for MS.
My feet are doing very well it's my knees and calves that are the biggest issue I am struggling with....the foot surgeon I went to see told me that TTs can affect your legs.
Re: Sharon: lumbar puncture and migranesSharon W on 4/20/03 at 20:23 (116636)
I've had migraines once in a while (rare but happens occasionally) all my adult life; the one I got after the spinal anesthesia FAR worse than any headache I'd ever had, and it didn't really feel like a migraine because it the 'pounding sledgehammer' was only in the BACK of my head. Typical migraines have always hurt mostly my temples and around my eyes.
I don't know if what they did to me a couple of days afterward, but maybe it was a 'blood patch'. I was new to living in Chile at the time, and I didn't speak that much Spanish yet, so all I really understood was that it was supposed to make me feel better. It didn't.
I think you may have me mixed up with someone on the fibro thing. My doctor has never mentioned anything about fibro. I was curious enough about it to do a little bit of research on my own, but it really doesn't fit my symptoms very well.
Happy Easter, Marie! I hope it was lovely and pain-free.
Re: Sharon: lumbar puncture and migranesSharon W on 4/20/03 at 20:28 (116638)
Sorry. Should have proofread this one a whole lot better, I guess... Trying to keyboard wearing wrist splints is a PAIN!
Re: Sharon: lumbar puncture and migranesmarie on 4/21/03 at 08:38 (116653)
I get mixed up alot these days. Neurontin makes me a little more spacey then usual.
I had the same type headache you experienced after my spinal tap. I thought I was going to die. Thought the back of my head was going to come off. As long as I stayed flat on my back I was fine. I never get headaches...well rarely, so it was not anything I was use to.
Yes we had a very relaxing Easter.
Hang in There! marie
Re: Sharon: lumbar puncture and migranesKathy G on 4/21/03 at 10:07 (116677)
The only lumbar puncture I ever had was done by a very good but very formidable neurologist whom all the nurses were terrified of. When I got back to my room, after having been duly warned about not raising my head, the nurse brought me in some Tylenol with codeine. When I said, I had no headache, she looked truly panicked and said, 'Oh please, just take it. All Dr. X's patients have to take it on a regular basis following that procedure and we get in so much trouble if one of them develops a headache.' So, I took all the pills they brought into me, tolerated them checking up on me every half hour to see if I was still lying flat, and I got no headache.
That was back in the days before managed care and when there was no shortage of nurses. I discovered that if you had a doctor who carried a big stick, you got outstanding care!
Re: Kathy GSharon W on 4/21/03 at 10:09 (116678)
Boy, were you lucky!
Did they find anything, with the lumbar puncture?
Re: Kathy GKathy G on 4/21/03 at 10:20 (116680)
No, thank God. This was years ago when they thought I might have a brain tumor or something going on because of muscle pain in my shoulder and neck and numbness on the same side. It was decided that every symptom I had was due to muscle spasms.
Re: Kathy GSharon W on 4/21/03 at 11:46 (116685)
It was good news for you, then. My MRI turned out to be good news, too -- I just got a call from the nurse, saying it was completely normal.