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Posted 5/6/2007 2:40 PM (GMT 0)
Hello all, I am new to this board. I am to see a new neurologist this month. I hope to finally find a doctor to listen to my symptoms and my frustrations of 5 years. I started in 2002 with severe facial pain and numbness in one of my legs as well as debilitating fatigue and mood swings. My doctor sent me to have an MRI. It came back that there were several lesions and could possibly be MS. I was then sent to a neurologist. He was pretty useless and rude to an extreme. When I tried to explain my symptoms (that I had wrote down) he kept waving his hand at me. I asked if he had even looked at my MRI findings. (he hadn't) He went out of the room and about 3 minutes laster came back and said those are just TIA lesions. What? I've never experienced any symptoms of a TIA. He asked if I smoked, I said not for 10 years. He then said "well, they probably occured back then" He was horrible. My regular doc than diagnosed me with fibromyalgia and chronic fatigue. I did start to feel a bit better over the next few months. (winter time) The next summer comes along and I begin having muscle spasms, pain in my hip and I had to use a cane to walk. The depression was horrible. I then see a psychiatrist who tells me I am bipolar?? I had several bad falls in the next month and then on to another neurologist. One more MRI. More lesions on the brain. However, because there were not lesions on the spinal cord, he felt that I did not have MS. He did concede that my problems were in the brain and central nervous system and recommended physical therapy. (no diagnosis) I go about another year or so, with the fatigue and problems popping up in one or the other leg and always in my right arm. I have constant muscle tics, so my psychiatrist prescribes a muscle relaxer. In March, my left leg began to feel very stiff and the knee hurt (especially when sleeping) I had a fall in my laundry room. I went to the emergency room and they took X-rays and said they could see nothing wrong. I could not walk at all on the left leg! They sent me home with crutches and an RX for percocet. I have made an appointment with a neurologist who is supposed to be very good and works with patients that have MS as well as fibro etc.. I still drag my leg and use a crutch. I still have pain in my knee, the muscle of my right arm and internittent pain on my face. I'm sorry for the long rambling rant,  but I feel so very frustrated. My vision has gotten worse each year as well. I have all or most of the symptoms of MS, yet cannot seem to get the treatment for it. Any suggestions for me as to what I should say to this Doctor? And also, Fibro patients do not tend to collect lesions on their brains do they?  Thanks all, Cece
Posted 5/6/2007 3:25 PM (GMT 0)
Cece,

I have both fibro and MS. Have actually been sick since Dec '88, but dx with fibro in '95, and MS in '06. Now they tell me it could have been MS all along so we are watching the progression for the next year. I am coming off the worse flare I have ever had, and happened to see my fibro doctor on Friday and he feels that both flared at the same time. I have alot of symptoms that come and go, but spascity is one I deal with all the time. Baclofen helps but makes me sleepy. I also need to pace myself and haven't found the right pace.

I rely on motrin, heat and/or ice. I have made bean bags and filled them with popcorn kernals and keep them in the freezer. Sometimes I need to use everyone I have.

I am sorry you are struggling for a dx, it gets so frustrating. People also tell me but you look so good. If only they could FEEL my pain for a day.

I'm rambling, sorry. Just wanted you to know your not alone. I am new to these boards, came because of this last flare, and everyone is very helpful, supportive, and listens. Good luck, feel better.

Debbie
Posted 5/6/2007 3:57 PM (GMT 0)
Hi Cecelia,

 

    Wow I'm sorry you're going through such a rough time!!  Fibro and MS are extremely similar, but from what you are saying it does sound like you need a second opinion and a doctor who will listen and test further.  Have you ever seen an opthamologist for your eye issues?  If it is MS, there is a condition called Optic Neuritis which can be seen on an exam whether you are having problems or not.  As for your leg issues you could ask about getting an emg/nerve conduction test to determine whether your problem is in the muscles or nerves.

 

    Do you have copies of your last two MRI's?  If you can get ahold of them you might want to bring those with you along with your list of symptoms just like you did before.  Hang in there Cecelia, hopefully this new doctor will give you some answers. 

 

    If this helps at all, this is a website for you to look at which explains just how similar fibro and ms really are.  Best of luck with your search for answers and at the very least while you wait I hope this new doctor will help treat some of your symptoms.

 

http://www.msakc.org/Articles/MSFibroLupus.htm

Posted 5/6/2007 4:39 PM (GMT 0)

Hi Cece,

 

Welcome! I’m so sorry to hear about your health problems and your long battle for diagnosis, and hope that your next neuro will be able to give you some answers. While I’m not sure the specifics of your situation, I do know that MS can be diagnosed without lesions on the spinal cord, however there are many different things that can cause lesions besides MS. What did the second neuro attribute the new lesions on your second MRI to? The fact that it showed new lesions does sound pretty suspicious of some sort of disease activity along with all of your symptoms. Hopefully the new neuro will take this very seriously. Have you had any additional testing for MS such as a spinal tap or evoked potentials?

 

 I also went through several neuros, one of whom was really, really rude and totally dismissive. One thing that I’ve found helps tremendously is to take someone with me to an appointment. I know this sounds funny, and I feel like I’m a big girl now and can handle a doctor’s appointment by myself (lol), but for some reason having a second person in the room really changes the whole dynamic. The two times I have done this the docs were way less dismissive, I got a more thorough exam, and my docs actually sat there and took the time to answer questions.

 

I did this once with my old pcp who was generally quite dismissive, and it was the one occasion when he was really nice. The second time I took a friend to my first visit with my current neuro, and the neuro spent around 90 minutes with me….yes, I did say 90 whole and entire minutes (the nurse finally pulled him away, lol). My friend was extremely familiar with my symptoms and history mentioned all sorts of stuff I would have totally left out, and she really stepped up and grilled him (I honestly tend to kind of freeze with a glazed expression on my face and not say much when I get to the docs). Anyway, while she was grilling him, I played the polite, submissive patient, and that combo seemed to really work. The neuro was not only helpful, he was actually friendly and chatty. Go figure.  

 

Anyway, I don’t know if any of the above will help, but best of luck with your new neuro, and please do let us know how everything turns out for you.

 

Sunny

Posted 5/6/2007 5:02 PM (GMT 0)

Cece,

5 years is a long time!!!  You need some answers.   I am sorry you have been so ill and that you have gotten no answers.  Please try to find an neurologist who specializes in MS.  At least find one with lots of experience with MS.  Good luck and keep us posted.  This is a great place for answers and support.  Welcome!

Love and prayers,

Posted 5/6/2007 9:35 PM (GMT 0)
Thankyou so much for all of your supportive answers! I have not been to an opthamologist yet and I have not had a spinal tap. The second nero was too vague about the MRI, he even said it could just be lesions missed on the first one. I don't know how that could be seeing as they used dye both times. Both reports mentioned possible MS, but these neurologists tended to be a bit dismissive about what a radiologist saw. I will try to take someone with me (thankyou Sunny) as I tend to lose courage once I get into the docs office. Thanyou all! Cece
Posted 5/7/2007 8:54 PM (GMT 0)
Hey Cece!

Awwww...i've been following u'r thread and i must say i'm sooo sorry u'r going thru all this!! It's just rotten to know something's wrong and not be able to get a straight answer...especially when u'r pretty sure of what's going on!! Hang in there friend and know we're all in u'r corner here. Keep that courage up...write down u'r feelings as in a bullet type format so u can pick them up quickly. Take a glance at that and then get it out to the doc. It does take a lot sometimes to speak up and stand up..even for ur'self, but u can do that and get the answers u deserve. Believe me...i know all too well how frustrating this is and i am pulling for u all the way. Don't stop til u get answers and the help u need. U KNOW something's going on...make them look at this closely and commit to u'r health. U'r well worth it!!!
Posted 5/9/2007 5:44 PM (GMT 0)
Wednesday p.m.

 

Dear Cece:

 

I have been DX'ed with MS for almost twenty years.  My neuro is 'da man.  All the stuff you'd dream about in a MS neuro.

 

Have you ever thought of contacting state MS society for a refferal?

 

There are many other issues that neurologists have to deal with beside MS.

 

My doctor's group of 15 only sees MS patients.  I am a lucky guy, in that regard.

 

John

Posted 5/10/2007 12:49 AM (GMT 0)

CeCe

I can sympathize with all you are going through.  I have gait problems, and use a cane as my left leg drags.  My balance is terrible and I have falls too. A year and a half ago I fell and broke my wrist.  It was a bad break and I needed surgery. I try to be very careful now and avoid ice and even wet surfaces.  I have the debilitating fatigue and I had the muscle tics too.

I was dx with MS 7 years ago but 2 years ago with lyme Disease. My Drs think it is a possibility that I have had Lyme disease all along which has caused neuro damage, and maybe MS.  I am just suggesting to check out lyme disease.  Most people don't know how debilitating this disease can be to the central nervous system.  I did not until recently and have met people who are handicapped by this disease.  The symptoms are similar to MS, and even lessions on an MRI can be caused by Lyme.  If you check it out see a Lyme literate lyme Dr.  You can ask on the lyme board here for a reccommendation for a Dr in your area.

I am slowly getting better with treatment but it will take a long time cause I've been sick so long.

Best of luck.  I hope you get some answers soon.

Posted 6/1/2007 12:19 AM (GMT 0)
I saw My new Neuro last week and he has diagnosed me with MS. He even apologized for his "fellow neurologists" that have put me through so much misery for the last 6 yeras. He was shaking his head that I had not gotten the obvious diagnosis. I now have "secondary progressive"
Posted 6/1/2007 1:20 AM (GMT 0)

Cece,

I am so sorry about your diagnosis, but hope that now that you have a good neuro you will be able to receive the proper treatment. I can only imagine that you must be going through a wide range of emotions right now, especially after all those years of being so sick with no answers and….questionable medical care. Please know that we are here for you, whether you have questions, need support, or just want to vent.

Sunny

 

Posted 6/1/2007 1:54 AM (GMT 0)
Hi Cece,

 

    Well, I'm certainly glad you finally got an answer, six years is a long time!   Thanks for coming back and letting us know.  Please let us know if we can help in any way. 

Posted 6/2/2007 1:21 AM (GMT 0)
Hey Cece

I'm so sorry!! After such a long time and i know u were so frustrated long before now. Seems sometimes u just can't get a doc to listen and it ends up costing u. Geez...Secondary Progressive. I"m so thankful u've been dx'd and at least have answers! Please lean on us all u need and want. We'll be here and we do understand where u are now. Take such good care of u'rself and know u have so many who care about u.
Posted 6/17/2007 9:07 AM (GMT 0)
Hi Cece,
I understand your total frustrations over the years with not getting the proper diagnosis. Bet it is a great relief to finally have a firm diagnosis.I'm sorry it turned out to be MS ...but it is better than not knowing and perhaps imagining something even worst.
My prayers are with you as you face these new challenges and adjustments.
Marie-Claire
Posted 6/24/2007 6:32 PM (GMT 0)
Hi Cece,
Sorry for the delay in your diagnosis. I, too, took a long time to be diagnosed and even though I ended up in the hospital in a major flare, I was diagnosed with secondary progressive. I have trigeminal pain being now quite well managed with medication. Having headaches (I am lucky to have them infrequently) or the facial pain (mine is trigeminal as I previously noted) is the only things I do not deal with very well. It makes me very grumpy not to mention adversarial which is not really my nature. My gait looks drunken to say the least and my writing is shakey. Having cognitive problems and speech problems completes the pseudo drunken picture. The good thing is, because I really don't drink, at least I don't have to deal with hangovers!!!
Now that you have been diagnosed (even though I am sorry that it was MS) at least now you can take some sort of action and leave limboland behind. We are here for you and know what you are feeling inside even though you may it may not show to the nonMSer. Good luck and let us know you are doing!!
Dale
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