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Old 08-03-2007, 05:55 PM   #1
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Unhappy Please help... lots of questions/concerns about MS.

Hi all, I was seen last month by my general practitioner who evaluated my symptoms, ordered every lab test under the sun and told me I had "classical" symptoms of an active MS episode. Labs all came back normal; he ordered my MRI and a referral to Neuro. Yesterday I had my neuro visit. Turns out I wasn't even scheduled to see a real doctor. They had booked me with a nurse practitioner who runs the Headache Clinic! She went over my symptoms and my MRI results, which showed there are “greater than 8, small foci of increased T2 and flair signal, predominantly within the subcortical and deep white matter of the centrum semiovale. Additionally, there are small, faint foci of increased FLAIR signal along the margins of the corpus callosum. With contrast administration, there is the suggestion of slight blush of enhancement of several foci within the bilateral centrum semiovale. This pattern is consistent with multiple sclerosis; the suggestion of faint enhancement of these foci may represent active MS plaques.” She basically told me I had MS based on my symptoms and the radiologist report. She suggested we review the MRI together, during which she said it looked nothing like MS and decided after looking at it that she doesn’t think I have MS at all. She said it looks just like a scan she sees with her migraine patients. She said, “I’ll bet you get lots of headaches right”. I’ve never had a migraine in my life and have never had a headache a little Tylenol doesn’t cure. She totally changed her opinion after seeing the MRI. Now, call me silly, but I think a radiologist is a bit more qualified than a nurse practitioner to read an MRI.

Symptoms for me started 2 ½ years ago with just numbness/tingling in my feet esp. when overheated. I’ve had 4 such episodes since then, each progressively worse than the last. Since the initial episode my symptoms have gotten much worse. My last episode this past month lasted for 10 days and was accompanied by near complete numbness in hands/feet. Cut my hand on a knife and never felt it. Fell once when ankles gave out. Extreme weakness in hands like it was nearly impossible to pick out change in my wallet, grasp the sheets tightly to make the bed, etc. Slight trembling of hands when trying to do small tasks and very clumsy. Right eye got blurry several times for ½ hour or so at a time. Mind felt foggy, unable to concentrate and extremely poor memory. Would watch a movie and not understand the end because I forgot what the beginning was about. Slurred words, but only late at night. Thought it might be because I was tired. Sudden vertigo. Extreme fatigue, which I’ve never had before. Would sleep 10 hours at night and take a 2 hour nap during the day. Usually, I’m quite restless at night and wake up often.

I tried explaining my symptoms to the nurse practitioner and after looking at the MRI herself pretty much negated everything I said. When she asked whether or not I would like to start meds if I did have MS I told her my husband was deployed and that I couldn’t risk having another episode while he was gone and that yes, to prevent that I would start therapy. She said, “oh so you want your husband to come home then?” OMG!! Like I would want to ruin his military career like that! I told her how tired I was during the episodes and she says, “aren’t all of us women always tired?” Uhhh… NO! My hubby can confirm during the 7 years we’ve been together I’ve napped during the day just a handful of times. I’m always on the go. She couldn’t diagnose it as MS because my symptoms weren’t present right now. I asked her if she had read my GP’s note because I saw him during the episode and she replies, “I’m sure I read it earlier this week”. After discussing all symptoms she said it was a textbook example of MS and asked if I’d looked it up online. Like she was thinking I’d simply come up with all this to try to get my husband out of deployment! In the end I asked her about a lumbar puncture to confirm/ rule out and her exact condescending words to me were, “oh I don’t want to put you through that right now… just have a good summer”. She thinks I’m somehow making this all up just because I don’t have active symptoms right now. I’m so very frustrated! She doesn’t want to do anything right now. She wants me to have another MRI in 6 months then come see her again. I hate to say it, but this is so typical of military medicine. Since when does a nurse practitioner rule out/ confirm MS?? I’ve read it’s important to start meds because it can possibly stop the progression of the disease. Is this true? Is waiting 6 months alright? She said even if I do have MS that she probably won’t prescribe meds because the side affects are worse than my MS symptoms. Will this only cause MS to get worse? I don’t want to end up in a wheelchair. I’m scared and I’m alone, I don’t have my husband here with me right now, I must be able to take care of my children and I feel I’ve received sub-standard care. Please anyone. Is this the normal way coming to a diagnosis? Am I over-reacting? Maybe the radiologist really did misinterpret the MRI? What are the usual symptoms? Is anyone having similar symptoms? I know it can be worse, I just want to treat it if indeed it is MS so that it doesn’t get worse. Is there a “good time” to start meds? Please please help me. Thank you to anyone who responds.

 
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Old 08-03-2007, 06:30 PM   #2
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Re: Please help... lots of questions/concerns about MS.

Hi, kitten! First, take a big deep breath. Kudos to your PCP for being thorough and setting you up with tests so you would have results for your "neuro" visit.

Some neuros aren't even capable of definitely diagnosing MS and even if they are, it's very common to still go on to see an MS specialist -- with the neuro's encouragement! So no, you're not nuts -- you get the picture correctly or well, most of it. Don't go back to this nurse OR the headache clinic. Even though I wouldn't trust her to say if something is MS or not, please know that it is the radiologist's job to look at the pictures and give a clinical impression based on what they see. It is NOT their job to diagnose. Notice the words/phrases they used in your report: "consistent with MS" and "may represent". Language like that is typical (and responsible!) and any good doctor will look at your films and not just read the report.

Another warning sign. She told you that she thought you didn't have MS and then asked you if you wanted to start meds if you had it. Yikes! So who was going to tell you definitively if you have or don't have it? Oh my.

Okay, so where you are now...

Please get copies of your films, reports and all test results. Call your PCP who was so thorough and tell him that you want a referral to an MS specialist or neurologist. And, you might want to ask why he sent you to that woman -- or maybe don't even bother.

So you know, your symptoms sound typical of MS but there are other things that could be going on as well. There are several things that mimic MS. Lyme is one of them and most Lyme testing is very often not properly done -- but we'll get to that another time, okay? One thing for sure -- it sounds like there is something neurological going on. Whether or not you go straight to an MS specialist or to a regular neurologist is your call but go you must! It's not that it's like something is definitely going to happen in the next 6 months but the stress of not knowing will drive you crazy! (And, very possibly make symptoms worse.)

I hope this post somehow makes you feel better. We are listening to you.

Last edited by Bearygood; 08-03-2007 at 06:31 PM.

 
Old 08-03-2007, 06:35 PM   #3
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Re: Please help... lots of questions/concerns about MS.

kitten, just want you to know that having MS does not definitely mean you are wheelchair bound. Don't believe everything you see on TV.

Last edited by Bearygood; 08-03-2007 at 06:35 PM.

 
Old 08-03-2007, 06:56 PM   #4
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Re: Please help... lots of questions/concerns about MS.

hi there. First of all, calm down, take a deep breath and TRY to focus. You are NOT alone here with your fears and as a person who has been (almost) where you are, I want you to know that YOU ARENT AS ALONE AS YOU FEEL.

I can understand, with your husband deployed that you are frantic in what you are going thru. I couldnt imagine going thru what I went thru (my dx a year ago) alone...so, youre going to have to trust me when I tell you that LOTS Of people here are going to offer you support, starting with me. ok?

Yes, your radiologist's report does sound alot like MS...and many of the symptoms that you describe, fit the bill exactly. BUT that doesnt mean it is MS, nor does it mean that you should stop now with your quest to find out for sure. Let me ask you, even with military insurance, do you have the ability to get another opinion? You now have a radiologists report, do you also have the films? IF not, get them NOW, even if you have to pay for a copy of them. Im not a doctor, nor will I begin to try to dx you- and there are alot of nurse practioners who I think are highly qualified, sometimes as qualified, to make diagnostic decisions BUT those nurse practioners are trained in the MS field and KNOW what to look for. Im not entirely certain the one you saw, is. Can you take your films and report (films more importantly) to a Neurologist or even better, a MS SPecialist for another opinon?

If you do not have or know of an MS specialist in the area, you can do two things; first shout out, or post to memebers here asking for referrals in your area, secondly, contact the local MS Soceity in your area and ask for names of doctors who treat MS ..start making calls. Sometimes, you DO have to pay for a second opinion, but in your case, I think it would be well worth the cost.

You asked about meds....MS meds, are a highly personal decision. Im on them, and many here are....some people choose to go holistic, however in the situation that you are in, you dont sound like you are against them....that being said, MS Meds DO NOT treat MS, but yes, they do slow down the progression of the disease....will you wind up in a wheelchair? No one knows. No two cases of MS are alike....but, let me put you at some ease here....most people DO NOT end up in a wheelchair, and even if it were to happen, its not going to happen overnight...it could take 10+ years- probably longer- before that might happen....now, would taking one of the MS drugs prevent it? No one knows FOR SURE that answer. I personally, am banking on it...and taking Rebif, which seems to be helping at this point....but again, its a gamble either way.

There are a couple of things you should know now which will help you. HEAT and STRESS are your two biggest enemies. HEAT will make you feel horrible. Start staying in the a/c as much as possible. AVOID outside activities as much as possible. Do you work out? Take it easy and do not overheat your body....work out in small short doeses and remember that swimming is the best exercise, as it keeps your core temp down.....STRESS is almost impossible to avoid right now for you. Youve got alot on your plate...BUT you HAVE to make an effort. That means knowing when to say NO to things which push you over the edge emotionally or physically...and it means TRYING not to worry about this to the extent that you are. MS is NOT a death sentence...and although it takes some getting used to the idea of having it, once you do start to grasp it, life goes on, pretty much as normal. Youre going to have to trust me on that one.....now, being that right now you are being told you DO NOT have MS...and you seem to think you DO HAVE MS...im only going to stress to you that getting another opinion is KEY here to moving forward.

i dont know much about your insurance, so youll have to forgive my ignorance. I also do not know your financial situation. But, there is help out there if you really need help. The MS society would be a good place to start finding out options. I have found them to be very helpful with advice.

I also want you to know that reading on the internet is NOT a good idea. Over the past year I have found more BAD information then GOOD information. Seeking a board like this was your smartest move! All of us here will share our stories with you, and give you support...however, we will never tell you what to do, or how to do it. Basically on the internet, you cant tell the difference between good advice and bad advice...you cant tell which websites are outdated, or old information...and sometimes its hard to tell the "snakeoil salesmen" from the legitamite site....if its a cure for MS, its bogus! THere is no cure....however there is alot of good advice to be found here, and youll find that the members of this board are a very closely knit group. We care, and we will share....and we will be here to hold your hand, virtually!

So, I want you to know that your frantic cry for help has been answered. You have found some place to vent, scream, cry and ask for help! However, being that I dont know enough about your situation other than to know you are scared- I cant really do much more than tell you that its not the end of the world, and you are NOT crazy to think that there is more to this then what you were told. I belive you are correct in your own beliefs that this nurse wasnt quite qualified to say what she did...its your body and you know it better than anyone. THe next step is to keep movign forward and look for another opinion.

If it helps, most people take years to get diagnosed with MS. You are already on your way, having had the MRI and having your GP believe in you. Start back with your GP, or go thru your insurance company...get another opinion. Radiologists only report what they see. They do NOT make diagnosises. Nurse practicioners CAN make the dx, however MS is not easy to dx. Meeting the criteria is tricky sometimes...you need to know that whatever is going on, probably WILL NOT change over the next 6 months....and if you do have another episode, you do have the option of an ER, where more tests, treatment and referrals will probably happen. This ISNT life threatening...ok? You need to believe that...

Even if you were to get on MS drugs (fyi) they do have side effects and the side effects do stink...they also go away when your body gets used to the drugs....the drugs can take up to 6 months to reallly kick in. I had 3 relapses my first 5 months on Rebif, and was ready to quit the drug thinking it wasnt worth it..however I hung in there, and am glad I did.....so the reason I mention this is, no matter what, you dont need to start the drugs ASAP, waiting a few months isnt going to make a big difference...but knowing what you are dealing with, will both allieviate your stress and help you to move forward. SO, go figure out how you are going to take those films to another doc for a second opnion.

Im 3 hours ahead of Calif here, so if you read this tonight and write back and I dont get back to you, dont take it personally...Im bed bound soon. But, Ill look for you in the AM. Please, TRY TO RELAX. No matter what , youve been strong and brave and made it this far....it wont get worse overnight. That I promise. Start thinking ahead as far as doctors...finding one, and staying on him until you get a definate answer. Maybe you DONT have MS..but if that is the case, they should be able to tell you what YOU DO have. MS is normally decided once everything else is ruled out...ok?

Hugs to you...stay strong.
Nikki

 
Old 08-03-2007, 06:59 PM   #5
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Re: Please help... lots of questions/concerns about MS.

Kitten,
I just had to laugh and send you another virtual hug. Here I am thinking Im the first to post to you, and Bearygood got hers in before I did! Notice we both said alot of the same things....like minds DO think alike! Youve now got two people who care and will help you with direction. Rest assured, you are not alone.
Beary- tee hee. We did it again! have a good weekend.
Nikki

 
Old 08-03-2007, 07:02 PM   #6
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Re: Please help... lots of questions/concerns about MS.

Nikki (and kitten) I re-read the original post after I responded and my reaction was this:

"kitten, that woman is an idiot!!!!!!" Oh,man!

kitten, don't let that woman get you down, honest. I hope you find a good doctor you can talk to soon.

 
Old 08-03-2007, 08:40 PM   #7
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Re: Please help... lots of questions/concerns about MS.

Thank you both for all the info!! I couldn't believe I already had replies to my message... yeah!!! I did request copies of the MRI and they will be ready for pick up on Monday. I also got a copy of the nurse practitioner's notes and radiology report. I will get a second opinion even if I have to pay out of my own pocket for it. I'm not sure if Tricare will pay for me to see someone outside of Naval Hospital Balboa here in San Diego. I called my PCP and left a message. He'll be back in the office on Tuesday, so for now I'm anxiously awaiting Tuesday! I will ask him about Lyme and beg for a second opinion. He seems like he'll be a valuable advocate for me. He was extremely thorough and took lots of time with me during my episode in late June. I will also ask him if he can set up an LP even though the nurse practitioner didn't want to do one. Do you guys think this is reasonable?

You guys are right about the heat. Everytimes when I have a hard workout or when it's warm outside it's like the symptoms come back nearly as bad as when I'm having an actual attack, but as soon as I cool off I'm back to normal unlike the times I've had attacks and nothing makes it better. I get overly hot, sweaty, extremely weak, trembly and my head seems so foggy. I only half jokingly asked my husband if we could be stationed in Alaska!

As far as meds are concerned, do you guys think most people with MS take the meds in hopes of preventing worsening of the disease or just some with severe cases take it? I know it's a personal decision. I think I would be much better equiped to handle this if I knew for certain I was being treated appropriately. I hear they have a great MS hub in Seattle, my home town. I wish I were there! I will do more research as far as doctors are concerned after my phone call Tuesday with my PCP.

I think the nurse practitioner thought I was just some whiney girl coming in wasting her time. The fact is, besides my prenatal care I had during my pregnancy with my 8 month old baby I've been seen just 4 other times in the last 10 years. Once for bronchitis where they nearly admitted me, then for my numbness 2 1/2 years ago, I had Salmonella 2 years ago and I was in the hospital for kidney stones last year. I seriously don't go to the doctors unless I know for sure something is wrong with me. During my episode I wouldn't have been able to type this. I know I'm not imaging this. Thank you so much for your support and encouraging, kind words. Your thoughtfullness and positive attitude made me cry! I know I'll be alright. I know it could be worse. I'm strong and I can handle this.

Last edited by kittenofthesea; 08-03-2007 at 08:51 PM.

 
Old 08-03-2007, 09:37 PM   #8
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Re: Please help... lots of questions/concerns about MS.

Quote:
Originally Posted by kittenofthesea View Post
Thank you both for all the info!! I couldn't believe I already had replies to my message... yeah!!! I did request copies of the MRI and they will be ready for pick up on Monday. I also got a copy of the nurse practitioner's notes and radiology report. I will get a second opinion even if I have to pay out of my own pocket for it. I'm not sure if Tricare will pay for me to see someone outside of Naval Hospital Balboa here in San Diego. I called my PCP and left a message. He'll be back in the office on Tuesday, so for now I'm anxiously awaiting Tuesday!
That's great, kitten. Only thing about the opinion though is that you did NOT really get one! I mean, what was that? If you can (and it doesn't put you in a bad position) I would complain about the referral to the insurance company. You were NOT referred to a neurologist as you thought you would be and again, you got one of the weirdest "opinions" I ever heard.

Quote:
Originally Posted by kittenofthesea View Post
I will ask him about Lyme and beg for a second opinion. He seems like he'll be a valuable advocate for me. He was extremely thorough and took lots of time with me during my episode in late June. I will also ask him if he can set up an LP even though the nurse practitioner didn't want to do one. Do you guys think this is reasonable?
Re: the LP, I would wait to see the neuro or MS specialist. Not everyone gets an LP -- if your dx is clear-cut there may be no need. Some doctors seem to do it as a matter of course, regardless, and others don't. For the most part, MS is dxed by ruling out other things but like I said, it depends on the evidence at hand (or lack thereof).

You said the doctor was thorough so I'm not going to ask about all the tests. However, re: Lyme, your doctor will tell you that he tested for it. The thing about this is that testing for Lyme is usually inadequate. You will unfortunately find many people with Lyme (or what is known as co-infections) who have had negative Western Blots or ELISAs. There's only one lab in the country that does more advanced testing (IGeneX) and I think the one for CP (Chlamydia Pneumoniae) is LapCorp. Doctors don't generally test for CP and IGeneX is not usually the "standard". But really, you might not even want to follow that route yet -- take it one step at a time and let's see what happens. Lyme is another weird one where patients often have to be their own advocate, just like with MS.

Quote:
Originally Posted by kittenofthesea View Post
You guys are right about the heat. Everytimes when I have a hard workout or when it's warm outside it's like the symptoms come back nearly as bad as when I'm having an actual attack, but as soon as I cool off I'm back to normal unlike the times I've had attacks and nothing makes it better. I get overly hot, sweaty, extremely weak, trembly and my head seems so foggy. I only half jokingly asked my husband if we could be stationed in Alaska!

As far as meds are concerned, do you guys think most people with MS take the meds in hopes of preventing worsening of the disease or just some with severe cases take it? I know it's a personal decision. I think I would be much better equiped to handle this if I knew for certain I was being treated appropriately. I hear they have a great MS hub in Seattle, my home town. I wish I were there! I will do more research as far as doctors are concerned after my phone call Tuesday with my PCP.
Meds are prescribed in the hopes of slowing down the progression of the disease. The studies for the drugs they'd give you a choice of say they show a decrease in exacerbations (MS attacks, also called "flares") and that future MRIs will show less lesions, etc. I am not taking drugs but it might be the right thing for you if you have MS -- it's a decision you'll make as you continue to educate yourself and if you do, there are many people here who can help you. The kicker is, even the honest doctors will tell you that it's a crapshot either way. It's important for you to know how different this disease is for everybody. Someone can have many lesions and few symptoms and have few lesions but many symptoms. Same thing with exacerbations. There is just no telling and that's part of the dilemma. Your understanding of all this can't come in one day or a few posts -- just hang in there, okay? Knowledge will come.

Quote:
Originally Posted by kittenofthesea View Post
I think the nurse practitioner thought I was just some whiney girl coming in wasting her time. The fact is, besides my prenatal care I had during my pregnancy with my 8 month old baby I've been seen just 4 other times in the last 10 years. Once for bronchitis where they nearly admitted me, then for my numbness 2 1/2 years ago, I had Salmonella 2 years ago and I was in the hospital for kidney stones last year. I seriously don't go to the doctors unless I know for sure something is wrong with me. During my episode I wouldn't have been able to type this. I know I'm not imaging this. Thank you so much for your support and encouraging, kind words. Your thoughtfullness and positive attitude made me cry! I know I'll be alright. I know it could be worse. I'm strong and I can handle this.

kitten, this was not my experience -- I'm one of the uh, lucky (?) ones whose doctor had to convince the patient they had MS, LOL! However, your experience is unfortunately more common and it takes some people years to get a dx.

I know you'll be alright, too. Keep us posted.

Last edited by Bearygood; 08-03-2007 at 09:40 PM.

 
Old 08-04-2007, 07:03 AM   #9
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Re: Please help... lots of questions/concerns about MS.

Hi Kitten.
Im so happy to hear you are feeling better, as far as having gotten answers! I told you we would be here for you!

You are doing everything right at this time. I read Bearygood's latest answer to you and totally concur (agree) with everything she told you. Although Bearygood chooses NOT to take MS drugs at this stage, she is one of the few who actually have made that choice. You can discuss with her, her reasons...but I will tell you that from what I know of Bearygood, she has a whole program which she follows in order to try to control her disease, and its a personal choice to do so. I couldnt do it her way- although her influence over the past year has gotten me on a supplement/nutritional program which I DO FEEL is starting to help me.

You asked about MS Drugs and the reasons why people choose to take them. Let me tell you my own story. When I was dx a year ago (and IM a very young 40 by the way), I was in my last two semesters of college (doing my MBA), I have only been married 3 years, have 3 stepchildren, and a 35 hour a week job. I was a former dancer, very in shape, very health conscious (okay, I smoke, but THATS MY ONLY VICE!) I worked out daily. I weigh 110 lbs....no one in my world has ever had MS or any auto-immune diseases, so this was completely foreign to me. I woke up one day with a tingley hand and fingers...after a few weeks of "maybe its a pinched nerve" or "maybe its carpal tunnel", I couldnt stand it anymore. Wound up in the ER, had a CT scan, was referred to a Neuro, had an MRI and a Spinal Tap, and BABOOM! He sent me to an MS SPecialists to make sure, but we both were pretty sure it was MS. The MS SPecialists was POSITIVE and gave me a diagnosis within a month. Both my MS doc and my Neuro wanted me to start MS Drugs right away. I read everything I could on ALL of them. I chose Rebif for me.....

Why did I chose to start the drugs? Complete and total fear of what might happen if I dont...and again, Bearygood is right, even my doctor told me it MIGHT or MIGHT NOT help me, but he FELT CERTAIN that if I didnt take the drugs, Id have more relapses, have more issues and because of where my legions are located, be playing with fire when it came to my eyes.....many people with MS (not all) develope Optical Neuritis (inflammation of the optic nerve) which, once developed, usually returns intermittently. Its painful and can cause damage to the eyes if it happens often enough or isnt treated when necessary....(other cases of ON are minor and can be left to heal on their own). That was enough to spur me into making the choice to do the shots..

Rebif is 3 times a week and under the skin, not into the muscle. We will all tell you more about the drug choices if it comes to that...but Rebif was my drug of choice....so far, Ive had one 6 month MRI checkup and everything was GREAT. No new legions, nothing on the contrast...and overall, Ive felt much better than the first 6 months...The end of August will be telling for me, as I will be on the drug for a full year and have another MRI scheduled (maybe we can go together? ). Thats when I can honestly tell you if it is working for me...but, so far, so good. It takes almost 6 full months for any of these drugs to really start working.....so the past (or second 6 month period) is the one they really watch to see...

I agree with what Bearygood told you about Lyme and the spinal tap...there is one more thing Ill add....some docs like to do the spinal tap, because they can use spinal fluid to rule out Meningitis,other brain infections, and believe it or not, spinal fluid is more accurate than blood when doing a Lyme test...so, its possible that he will want to order one. I had one, it was NO WHERE near as bad as thinking about it was!! The procedure itself toook 20 minutes.....and I found out answers to things I couldnt have found out any other way. Some legions never show up on an MRI, but do show up in spinal taps as Obands.....this is all way too much info for you right now, but I did want you to understand that although she is right, it MIGHT not be necessary to have done...it also might come up that he wants it done for reasons called "ruling out other things". ok? Thats why I had it, we were already sure it was MS, but had to rule out infection.

Girlfriend, do keep us posted on Tuesday with what your PCP says...Ill be thinking of you all weekend....youre on the right path...and Im really glad to hear you were sensible enough to startt getting copies of those films and records...those will be your best friend over the next year. KEEP EVERYTHING! And try to relax...(stay out of the heat, too!)
Nikki
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Old 08-05-2007, 12:53 PM   #10
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Re: Please help... lots of questions/concerns about MS.

The reason I have chosen to take conventional medicines is because I really believe that there will be a cure within a few years so I want to say as healthy as possible. I was diagnosed 20 years ago and they had no treatment for MS. That could have a lot to do with my decision too. I did not like it when I would have bad exacerbations and all that could be offered was steroids. The last 17 years have shown a lot of progress being made in treating MS.
I also believe in using a lot of alternative treatments. Acupuncture works great for me. I also use many supplements.
You have to choose the path that is correct for you.
The reason I have found this board so helpful is because the information is here no matter what course you choose.
I have chosen to try most anything that seems reasonable to me after researching it.
I will be getting my first infusion of Tysabri tomorrow. I am a little nervous but having new symptoms present made me change to a new neurologist to get back on a more aggressive track.
Candy

 
Old 08-05-2007, 09:56 PM   #11
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Smile Re: Please help... lots of questions/concerns about MS.

wow i cant believe what you have been through with that nurse!My partner has just been diagnosied with MS and is currently in hospital (we live in Perth,Australia) receiving steroid treatment to slow down the progression of the MS and stop the symptoms. It is so scary as we do not know what the future holds for him but at least we got a clear response to start off with tand the G.P. we first saw got onto it straight away and although we had to do the ringing around to find a nuerologist we were lucky to find a relly good one and although the news at first was a huge shock we are coming to terms with it and are so grateful to be here in Australia and have had such a quick response to it where as at home (New Zealand) we could have been on the waitng list for who knows how long and doing possibly more damage. i wish you the best of luck and definatly recommend a second opinion after that shocker! And even though the diagnosis may be hard to take there are so many people who live 'normal' lives even with MS.Take care

 
Old 09-19-2007, 10:38 AM   #12
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kittenofthesea HB User
Smile Re: Please help... lots of questions/concerns about MS.

Wow... so much has happened for me since the first scary days of hearing "MS". Well... I kicked that crazy nurse practitioner to the curb and requested a "real" doctor outside the military hospital for a second opinion. Dr. Chaudhary is awesome!!! She's extremely well educated in the field of MS. She spent alot of time going over my symptoms and MRI and yesterday gave me the diagnosis for MS. She throughly went over all treatment options including lots of alternative medicines, but I decided to start with Avonex. With a teenager, a 10 month old and my husband deployed with the Navy until next year I just didn't think I had the stick-to-it-ivness to handle a strict diet plan. I just got a call from my Avonex case worker and I'm actually excited to begin therapy! I'm impressed with the support this company offers, but I'm more excited about the fact that I can finally start doing something about this disease. Thank you Bearygood, MSNik, moore170 and Cat760 for your words of encouragement, advice and support! I guess my next set of questions will be about Avonex??

 
Old 09-19-2007, 11:04 AM   #13
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Re: Please help... lots of questions/concerns about MS.

Quote:
Originally Posted by cat760 View Post
wow i cant believe what you have been through with that nurse!My partner has just been diagnosied with MS and is currently in hospital (we live in Perth,Australia)
Perth is nice, but it can get hot in WA. You might consider a break from the heat during the summer. Of course, the ocean breeze is nice, but you might take a trip down to Esperance or Albany. Albany has a real nice, cool ocean breeze (I thought it was cooler than Perth).

 
Old 09-19-2007, 11:07 AM   #14
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Re: Please help... lots of questions/concerns about MS.

Quote:
Originally Posted by kittenofthesea View Post
Wow... so much has happened for me since the first scary days of hearing "MS". Well... I kicked that crazy nurse practitioner to the curb and requested a "real" doctor outside the military hospital for a second opinion. Dr. Chaudhary is awesome!!! She's extremely well educated in the field of MS. She spent alot of time going over my symptoms and MRI and yesterday gave me the diagnosis for MS. She throughly went over all treatment options including lots of alternative medicines, but I decided to start with Avonex. With a teenager, a 10 month old and my husband deployed with the Navy until next year I just didn't think I had the stick-to-it-ivness to handle a strict diet plan. I just got a call from my Avonex case worker and I'm actually excited to begin therapy! I'm impressed with the support this company offers, but I'm more excited about the fact that I can finally start doing something about this disease. Thank you Bearygood, MSNik, moore170 and Cat760 for your words of encouragement, advice and support! I guess my next set of questions will be about Avonex??
The Navy has some good doctors, but MS is not part of the Navy. I was in the Marines in 1982 when I was diagnosed with MS. They kept me onboard until 1984 when they knew I was not going to heal. I am glad you could get help off-base. Stay cool and try to avoid the SOCAL heat.

 
Old 09-19-2007, 01:15 PM   #15
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Re: Please help... lots of questions/concerns about MS.

Hey Kitten! So glad to hear that you are feeling better and in better spirits! Thats really good news! And, your welcome for the support...comes with being part of "this" family!
You said your next questions might be about Avonex...Im on Rebif, which is the exact same drug..but given 3 times a week instead of once. The idea is that the drug stays more even in your blood stream, so that it doesnt drop offf by the 5th, 6th or 7th day. Truthfully, I love Rebif. Ive had all good results to date...however, nothing wrong with Avonex or Copaxone either if they work for you...are you in the nasty position of researching drugs yet? If you are, do a search online here, name the drugs in the search box and see what people have to say about them....then, post specific questions to us. Well give you the answers! You might also choose to go the holistic route. Some people just do not feel it is worth doing the shots...thats a very personal choice, but we have people here who can talk to you about that, too.
Hugs to you...keep us posted!
Nikki
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RRMS- dx 05

 
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