I'm new to this forum and have stumbled across it looking for info on any info I might be able to find on what my problems could be. I just don't know anymore what to think. I started back in 1999 with a severe headache that would not go away. Mainly centered in back of my right eye. My then primary care doctor thought it was sinus and prescribed something and then wouldn't go away still so then he thought it was a tension headache. I began to start waking up in the middle of the night with severe headaches. My insurance switched and so did my primary care doctor. My new one sent me to a neuro and she prescribed something that seemed to help a little with the constant headache but was still waking up with worse ones. She claimed they were cluster headaches. Evenutally they started to fade out but still had constant headache. She noticed that I was weak on my right side after I complained that I had been having problems with back of neck hurting for some time. She sent me for a Cervical Spine MRI and then referred me to a neurosurgeon. He said the MRI showed degenerative disc problems at C1 C3 C5 C6 and C7 and figured the headaches were caused by the disc problems as pain felt in head from the spine.
He put me on Motrin and Skelaxin. It seemed to help a little but he noticed my neck has and still is very stiff. Cannot touch chin to chest. Last month after being on the Motrin for over a year, he thought it a good idea to start cutting back on the Motrin. I wound up starting up with constant headache again and next visit I saw him with bad headache behind the right eye again. He prescribed Neurontin which helped. I still get it but not as bad. He is continuing to increase the Neruontin. The last visit he remarked on the weakness on my right side and that it has persisted all of this time and I told him that I had noticed it had gotten worse. It's hard to hold right arm up for any length of time or pick up objects with one hand. Also has gotten harder to play the piano. My right leg has gotten weaker also. He ordered a brain MRI even though I had just had one of those back in March of 1999 at the beginning of all of this. I would really appreciate any ideas you may have on this and what forum I should really be in. What could my doc be thinking this could be? I'm getting worried and depressed that this has gotten no better. The Nerontin and Skelaxin seem to be making me so tired and out of sorts. My neck is still hurting and seems to shoot pain thru my shoulder and arm and different areas of spine. Sometimes it's hard to walk I even slept on my lunch hour the other day and luckily one of my co-workers was kind enough to come in and wake me up in an hour knowing of the problems I have been having. So many times I forget things and get confused. I forget certain words while I am speaking or writing and sometimes whole thoughts. I feel bad at work at times and embarrassed and try to cover everything up by smiling as much as I can and not trying to show how bad I feel, but don't know how long I will be able to keep up with this.
Thank you all so very much for your advice and ideas on this. Take care and have a good day.

I don't have much clue as to what could be causing your pain, but I would trust the neurosurgeon to know what she's doing as far as investigation is concerned. And if you have worries and concerns that are depressing you, tell that to the doctor and discuss them, she may be able to put some of them to rest, and ease your mind.

What I do know a lot about is people's reactions to this type of problem. The more you smile and try to hide how badly you feel, the less people understand that you really are suffering. You don't have to whine or complain about it all the time, but it's okay to show people that you have a problem, and some people (like your thoughtful coworker) will be understanding and helpful.

If you can afford to and if your benefits allow for it, it may be a good idea to claim short term disability so you can deal with your health problems. Stress generally makes things worse, and the more stress you can cut out of your life (since you cannot cut out the stress from the pain and other problems) the better.

I wish you the best of luck with this! *comforts*

Darianya

[This message has been edited by Darianya (edited 06-23-2001).]

Thanks Darianya
It's so nice finally having someone to understand all of this. Although I don't
think I will take the short term disability
for now, I'm a single mom with 2 grown children and 1 seven year old and need to work in order to get by in the world, I will take some of your advice. Makes me feel better knowing I'm not alone with this.
Take care

Be sure they thoroughly investigate the cause of your right sided weakness as this may or may not be related to your headaches. If at any time you feel they are not doing enough testing or the medication is not working well enough etc be sure to speak up and let your doctor know this. Good luck and it would be nice to keep us posted as to what they discover is the cause of you weakness problems.

Okay mlgable, I will definitely keep in touch. My doc is supposed to be a very good doc but is really hard to talk to. Very arrogant, and in a hurry all the time. He also makes me feel very stupid. I've considered swithcing docs but hate to have to go over the whole thing again. One question if anyone knows. My doc is a nuerosurgeon and have been wondering if an orthopedic specialist is better for these problems. Just wondering. Thanks again mlgable for your info.

Regarding your right sided weakness as well as headaches......A neurologist is definately the one you want to be seeing at this point. If your doctor makes you feel stupid and gives you the feeling you would like to change docs is there by chance someone else in his practice/clinic who could see you instead? That would be one option and you shouldn't have to feel like you were starting back at square one since all your records are right there already. Just a thought.

You know, I had a specialist very like that. He didn't want to hear my thoughts on my own health and was constantly interrupting me, and all sorts of counter-productive things. Then I sat down with him and told him how I felt about the way he was treating me, and he was very understanding, and made an effort to do things a little differently. Before you go switching doctors (which you should do if it doesn't improve) perhaps talking these problems out with him is a good idea? It certainly can't hurt, anyway! Besides, a good relationship with your doctor is essential to getting good care. If you work things out with him, your care will improve, too!

Good luck,
Darianya

Hi guys,
I got my MRI results last week and wasn't too happy with the results. Looks like I have either MS, strokes or a tumor. My neurosurgeon (haven't had the nerve to switch yet) wants to wait 3 months to have MRI done again to see if one of the areas has grown suggesting a fast growing tumor that would have to come out. He said no matter what, there is definitely demyelinating disease going on according to MRI. He also showed me how jumpy my reflex was in my right foot telling me that shows something is going on also. I really don't know what to make of this. Feeling so many different things at once. I picked up my MRI films today from his office and will be taking them to my former neurologist for a second opinion next week. In any case, I do appreciate everyone's support here and don't feel so all alone in this.
Take care everyone,
Kathy

ok guys I got a second opinion from the neurologist. She wants me to get in touch with a doc from Hopkins since they are very advanced in this area. I've made an appointment for the 17th so I will have more information to give y'all then. Hope you're all doing well and I'm very sorry it's been awhile since I've posted something. Between work, home, family and health, it's hard to keep up with anything these days.

Take care and will be in touch...

Hi everyone!
I went to the neurosurgeon from Hopkins yesterday and he looked at my brain and cervical spine MRI films from last year as well as the brian MRI I just had done. He said this definitely does not look like a tumor to him and is not strokes. He said to him it looks like MS. I am confused and numb by this. He says that something definitely looks wrong withthe cervical spine MRI and he thinks MS is showing up in this as well. He wants me to see a neurolgist that specializes in MS in Hopkins. He gave me the name of one that is supposed to be excellent. My questions are, are headaches commonly associated with MS and the seizure disorder that I started with 14 years ago then faded after 7 years, could that have been related to MS all along?
Thanks for being there guys and lending an ear.

MS can take on lots of different symptoms. My girlfriend has MS and her docs felt it started after a very bad bout with a viral type flu. Her symptoms were frequent supposed urinary tract infections, and periods where her one leg would act up so bad that she would be told to use crutches since they could't find a phyiscal cause for it at the time. She was very fortunate that her regular doc was away on an emergency and she had to see someone else. Her regular doc shouldn't be licensed to practice medicine but that is a whole nother story. The other doc immediately asked how long she had been having these problems and got her checked by a urologist first and when that was negative sent her to a neurologist who did a spinal tap for MS which proved positive. I have seen many who have various other symptoms or signs and have been diagnosed with MS. As I was re-reading all the posts MS is one thought that came to mind when you spoke of the right sided weakness etc. Headaches could come from the fact that MS can cause vision problems and also if you are overcompensating for the weakness you may be putting your spine in an awkward position causing problems. These are just thoughts. Good luck and hopefully they will figure out for sure what is causing your problems before to long.

Thanks for your thoughts on this. After reading your post I was starting to think when problems of mine started. Around 2 years ago at Easter time I was sick in bed for about a week with what the doc had called a viral infection. After that I never did feel as energetic as I once had. I couldn't even continue running every evening with my dog as I once had because of being tired and feeling as tho my feet were laden with cement. I still tried a couple times months after this but would have the same feeling and also an electric shock feeling going down into my right arm when my foot would hit the ground. After a few steps I'd have to walk. Walking has even been more of an effort. The headaches didn't start until October (6 months) after that in 1999. The following year I was sick again with a viral illness and the weakness on my right side had started shortley after that right before I started seeing the first neurologist that had been concerned about thinking it could be Myasthenia Gravis. The neck pain I had off and on for the past 8 years had suddenly started getting worse and when I mentioned this, she ordered the cervical MRI. After seeing this, she referred me to the neurosurgeon who I have been seeing every other week for the past year and a half. I'm just wondering now if these viral illnesses could have been the start of all of this.
I guess they will be able to find out at Hopkins when I have the appointment with the MS specialist. This is causing alot of worry here thinking about all of this.
I sure am glad there is a forum here where we can all write and ease some of the stress we are under.
Take care and will be keeping you updated. Let me know how you're doing as well.

I don't know anything about MS, but if there is a specific test for it then I'd insist on getting one. If for some reason it turns up negative or questionable, you might want to look into chronic fatigue syndrome. A decade ago this was thought to be a made-up disease but now there is a lot of info on the web about neurological components to the disease, also hormonal upset (hypothalmic-pituitary-adrenal system). I certainly hope you get an accurate diagnosis as well as a good prognosis.
Karen

MS is usually diagnosed with a spinal tap. A lot of what I have heard and read regarding MS and what causes it has seemed to point to the viral infection theory. It certainly seems that way with my girlfriend. Whatever the outcome of you appointment with the MS specialist I wish luck. Write here anytime something comes to mind. Someone is always checking the boards day or night.

I don't know much about MS either but the Neurontin sure has helped my migraines even the ones caused by barometric pressure!! Anyway, I think maybe some of your sluggishness and the problem with words and thoughts could be caused by the Neurontin. I noticed that problem increasing after starting with that drug as well. As long as I don't get lost I can deal with it. It sure beats the awful pain I had to deal with before.
Hope you find the answers you are looking for and can get some help as well as peace of mind.
Vickie

Hi,
Thanks Vickie. I appreciate your information. Unfortunately I stopped the Neurontin a few months ago when docs started suspecting MS and still have had problems with word retrieval and memory. Some days I feel like I'm walking around in a daze also. This Wednesday is my appointment with the neurologist who specializes in MS at Hopkins. I'm hoping he will be tell me what this is and isn't. My regular neurosurgeon who I have been seeing told me my 2nd set of MRI films have not changed any since the the ones I had done 3 months prior to this. It does look like he has ruled out that the 1.5cm x .02cm lesion that appears in the frontal operculum as being a tumor. Does anyone know what the operculum is? I've never heard of this term before pertaining to the brain. I am wondering how significant a 1.5cm x .02cm lesion is as compared with the scattered foci in the cerebral white matter that was stated. I'll be glad to get this next appointment with and hopefully know what is going on. Thanks everyone for your time and wish you a good evening tonight and wonderful day tomorrow.
Kathy

Hi kathy,

I read your messages here on the forum and feel so bad for you. I am so sorry you are going through such pain and worry, it must be frustrating and scary.

I don't have the same pain as you but I have had a constant headache for 10 years now. You can read my message here on the message board

I do know what it is like to worry and be in a lot of pain though.

You are in my thoughts and prayers. I will be thinking of you on Wednesday and hope you get some answers to your pain.
Shortstuff
Real name : Katherine

Operculum as refering to the head has to do with the temporal lobe which has to do with smell, some association areas for memory and learning and a region where choice is made of thoughts to express. I got the info from a medical & nursing dictionary. You may have found all of this out by now.
I sure hope you are getting all the help you need from your doctor/s. I will pray for you.

Hope you've found out what's going on by now. God Bless you and yours!

I've recently had problems w/ Optical Migraines and as i've been looking around the net I've noticed that most of the people w/ this type of problem are being checked out for MS.. I've had only 6 of these headaches in my life but 3 of them have happened in the last month. I'm on day 2 of one right now and the only thing that's keeping me sane are the pain blockers I have placed on my temples and the back of my neck.
These headaches start w/ seeing shiny x's and other bright obstructions. I've only had one of them that didn't give me a headache afterwards.. the other times the headache followed about 20 min. after seeing 'stars'(that's what I call the vision problem). Have any of you had this kind of headache? Have you had it diagnosed? I have a major adversion to Dr.s and hospitals....I've only been seen for this problem once and was given pain pills and told to get some rest. Let me know if any of you have had this type of headache.
Thanks
Brenda

Hi there,
I've been hanging in there but growing increasingly frustrated. Wishing the docs would find out exactly what is wrong. My Hopkins specialist had ordered a MRS(sort of like a MRI)back in November and it took all this time for my Health Insurance company to put in in front of their board and deny it saying it was too expensive and would'nt show anything different then what they have found anyway. So he told me to get a brain MRI done since it has been 6 months since my last brain scan and the insurance will cover this. I'm wondering if it could really change much in 6 months. My cervical spine MRI last month showed the same as it did previously with degenerative changes to the discs and spondylosis. My thorasic spine MRI was normal. I do know that my right sided weakness has increased and my neurosurgeon last month said that he could really see that it had progressed since the last time I had seen him which was about a month before. He said he would be sending his notes to my Hopkin's doc along with his thoughts that I should have an Evoked Potential Test. Over the past few weeks I have felt weaker and have noticed some pain in my right side also. When I reach out my arm and hand I notice my hand trembling. I'm just guessing that this must be related to the weakness as well. I'm so forgetful all of the time and really have a hard time with decisions about everything. Last week I parked as usual in the garage at work but since I had parked on a steep incline I really had trouble pushing open my car door. In fact I couldn't, I had to push it open with my left foot and then almost crawl out of the car pushing off the floor with my right knee because I couldn't push up with my right foot. My boss suggested that I apply for a handicap tag just for use in the garage so I could park on a lower level that would be more level instead of all uphill or even maybe being able to park at a closer garage so I'm not as tired from my 10 minute walk in the morning when I get into the office. On a lighter note, I have noticed my headaches have been better. Only some pain behind my right eye once in awhile. Anyway, I am wishing they would just find out what is wrong so I can do something to keep it from getting any worse. The nuerosurgeon says it it's not MS then it must be some other neuro degenerative disease. They both tell me to call them right away if something changes. I asked the Hopkins Doc what this means and he says like if I wake up and am unable to move. I really had to laugh to myself at this one...like I wake up one morning unable to move and then...How do I get to the phone to call if I can't move? rofl....I tad too late don't you guys think?
Ok I know I'm getting kind of sarcastic...sorry
Did anyone else ever go through anything like this just to find out what is wrong. I'm even asking myself if this could all be in my head. (No pun intended) ok kick me...lol
I'll let ya'll know how everything goes with the next MRI and doc visits.
Take care and looking forward to hearing from you,
Hugs
Kathy

99% of the time when doctors are suspecting MS they
will do a spinal tap. Most often it shows up there. There have been a few who have had neg. spinal taps but still diagnosed with MS. A friend of mine who has MS was first told that she had several brain tumors. She thought she was going to die. They ended up being the MS lesions. Relapse Remitting MS has symptoms that come and go. Some days you feel better and then suddenly you will have weakness or many other symptoms.


Denise

I got the brain MRI done and my doc called and said it looked like there were no changes and the large lesion in the frontal lobe did not look active. This sounded pretty good to me but the more I thought about it, the more I thought I should have asked him what exactly did it mean that it did not look active. I was hoping it would rule out the MS theory so I called him back the next day. He said that it looked to him that MS would probably be unlikely but at this point still are not ruling it out. My neurosurgeon has set up a Visual Evoked Potential for next week and also a spinal tap and myelogram for March and he was very glad to hear this. Does anyone have any information on these tests. Will the spinal tap and myelogram be horrible to go through? Does anyone know what the term not active means for the brain lesion? My right sided weakness is still slowly progressing and my neurosurgeon could see the changes in the way I walked when he asked me to walk down a long hall. This is all very overwhelming to me.

A spinal tap isn't too bad ,especially if you have ever had an epidural. Now afterwards the headache that can occur is pretty painful.
Many times, lesions show up on mri's on people who have headaches alot, so maybe your lesion is being caused by them.

You neuro should do an EMG on your weak side. They stick needles in certain areas and record the impulses.
It's used to help diagnose many neuro diseases.

You should try posting on the Neuro forum on the
Braintalk board it's much like the healthboard.It's
a very active forum and can give you lots of answers.
The MS forum on the same board is very active too.

Thanks Daelkin for all of your information. Back when I first had a MRI the doc was saying that the small lesions I had could be possibly from the migraines but were very concerned about the large lesion. It measures 2.5 x 1.5 cm in the right frontal lobe. They've ruled out strokes and tumor and said that it most likely is a degenerating condition. With the way the weakness has been starting to progress, it looks like that might be correct. I'll have to let you know how this next round of tests go. Thanks for being there for me.
Kathy

I know your doctors were pretty much under the assumption that you possibly have MS, but what about fibromyalgia? I don't know much about it but it can cause a person all kinds of problems. Just a thought.
Still praying for you.

[This message has been edited by Vickie (edited 02-23-2002).]