doubts MS dx
 

Hi Everyone!

I wanted to connect with people who have MS because I seriously doubt my diagnosis. This looks like one of the best online communities so I had to join. I'm almost 52 years old, and I've been disabled with major neuro problems for at least 20 years, although, I have been sick for 35 years in various degrees. I was diagnosed after years of misdiagnosis. You know how that goes...

MS meds have not been kind to me, so I don't take anything, except something to help me sleep. After 20 years, my liver and my body just can't take anymore. I used to take Copaxone, steriods, and even tried chemo for a year.

So, here is the reason I need you guys: The reason I second guess this diagnosis because of head pain. I feel a deep soreness when I lay on my left side at night. Sometimes, I can't put any pressure on that side at all and if I happen to roll over on that side at night, I wake up with my left eye bulging, and my heart racing. My eye quickly goes back to normal when I stand up.

Does anyone know of another person with MS who has this kind of head pain? This is not a headache. This feels like a bruise beneath my skull with swelling and soreness that follows a bruise.

I only have two little lesions on my Brain MRI that come and go. At first, my MS neuro said they looked like hematomas, but he quickly told me it was MS. Does that make sense? If someone can convince me this head pain thing is normal with MS, I'll listen - promise.

♥ To you all, Nali

Welcome Nali!
 

Thank you for introducing yourself! :)
You are SO RIGHT in that you've found the 'best' forum !
http://dl8.glitter-graphics.net/pub/...w4jd47860z.gif
The support here is 24/7 !

You pose some VERY good questions!
More folks will be along shortly who know more than I on this issue, but I saw your post and wanted to 'welcome' you!

You've got Friends!
Rae
:hug:

Welcome Nali! I too have heart racy issues when I lay down. My BP goes funny, and I do get headaches. I am currently undergoing testing to see if my MS is affecting my autonomic nervous system as well as my central nervous system. I too was dx late. I was over 40 when I finally got a correct dx. I wandered for a few years, and kept asking "are you SURE this is MS?" I have received loads of assurance, that yep, I am right in the thick of things with the other patients. *sigh*

pull up a chair, and grab your reading glasses. We would love to hear your story.

Thanks Rae! I look forward to talking with others.

Thanks, Dejibo,

What sort of tests are they doing to evaluate your autonomic nervous system?

My BP hovers around 85/52 - I know, that is l-o-w. Ny heart only races when I put pressure on the left side of my head.

The thing is, I don't get headaches. I have head pain. Ouch, don't touch, can't put pressure on that side, head pain.

Welcome Home Nali. :hug:

Thanks, Sally! ♥

Thanks, Kitty!

I appreciate your input. My doc knows, but he doesn't "get it", yet. However, I'm determined to make him comprehend. MRI due in November.

Hi Nali,
A big Welcome to you. I'm so glad you found us. We are here to help and support each other, we learn new things everyday on NT.

I get head pains, in the back of my head, around ear level, and the sides of my neck, and behind the ears. It is not a headache. Even touching it hurts.

If it is windy and my hair blows, I get the pain. Lying in bed on my pillow is painful too, but not all the time, I do toss and turn.

I have had it since the last few years and my Neuro is aware of it, my yet nothing helps, sorry to say.

I know you are doubting your DX of MS, many people do too if they don't present with the classic symptoms when first dx'd.

I am blaming my problem on blocked veins in the jugulars, but that's a whole new story. CCSVI, as we call it.

Come down and join us on the main forum here, unless you did already. Many more people would see your problem and join in.

When your BP is that low, your heart rate will automatically speed up to try to bring the BP to a more normal level. That just might be what is causing your heart to race. JMO.

Nice to meet you. :)

[QUOTE=Lady;669513]

I am blaming my problem on blocked veins in the jugulars, but that's a whole new story. CCSVI, as we call it.

QUOTE]

Hi Lady,

Thanks for posting. Sorry to hear you have the head pain too, but glad to know I'm not alone. That sounds twisted...huh?

Anyway, CCSVI has my attention, too. I look forward to hearing more about this.

♥Nali

Kinda newbie
 

Hi everyone, I am not really that new but haven't been here for a very long
time. Many reasons, mostly my life was consumed by my Mom inlaw with AD, who is now in a home. Not that she isn't still a primary focus, but now that sh isn't living with us I can at least think clearly.
It's nice to have this forum to share info and experience, something I have missed.
I was dx'd 8 years ago now, rrms going towards spms. Then had Novantrone on the three month protocol and have had stable mri's since. Previously was on rebif, copaxone, steroids. I am not on any disease modifying drugs right Now just drugs to treat all of the residual damage and symptoms.
My biggest challenges these days are bladder infections, fatigue, and muscle and nerve pain. Thanks for being here everyone, it's great to have a place to go.
Sandra

Hi Sandra.:) Welcome back. :hug:

Hi Sandra, Welcome back. I took care of my Mom with Alzheimer's disease, my kids, and me with MS, and I worked on different shifts with my DH. :eek:

So I know what it's like, hard! When she went into a nursing home, my MS doctor said finally. Stop being a martyr, she needs care 24/7 and you look like crapola with dark circles under my eyes.

I hope you can stay with us, we are looking forward to talk more with you, and more often if you can. I hope you feel comfortable being back in the group.:) Nice to meet you.

Nali, it's sad, but true, but nice to know others have the same symptoms you do. You are never alone on this forum, trust me.:)

Hi Sandra, glad to see you back :)

Hey Snoopy, I recognize you! Thanks everyone for the warm welcome, I really appreciate it.
Sandra

Hi Sandra. I remember you from the other forum. Welcome back.

Hi,

I haven't been able to read all the postings yet, but thought I should introduce myself.

I am 39, have a wonderful husband, 2 children and live very close to Pittsburgh. My biggest MS symptoms so far are Trigeminal Neuralgia (TN affects nerves in your face/head/ear causing much pain) and Depression. I had brain surgery a year ago to help my TN (still have much pain, taking Neurontin, Copaxone, Saphris, Prozac, etc).

I was diagnosed with MS at same time as TN almost 2 yrs ago. I don't work anymore (19 yrs at job). I do the best I can every day as far as the kids go. Everything else...not so much.

Anyway, hello and thank you for your support!

:winky:B-

Could it be Trigeminal Neuralgia?
 

[QUOTE=Nali;668871]

So, here is the reason I need you guys: The reason I second guess this diagnosis because of head pain. I feel a deep soreness when I lay on my left side at night. Sometimes, I can't put any pressure on that side at all and if I happen to roll over on that side at night, I wake up with my left eye bulging, and my heart racing. My eye quickly goes back to normal when I stand up.

Does anyone know of another person with MS who has this kind of head pain? This is not a headache. This feels like a bruise beneath my skull with swelling and soreness that follows a bruise.

Nali, I have MS & Trigeminal Neuralgia. Look it up and see if it fits, then maybe Dr. will listen & treat you for it.

Good Luck!
:hug:B-

welcome to NeuroTalk, B- :)

We are here to support each other through the bad and the good, so just join right in anywhere.

Having a loving Family, with this rotton disease, is wonderful. Sorry for the TN.:(

Again Welcome. :hug:

Welcome B! :hug:

Hi B,
I just wanted to Welcome you too. This is a great place for support and information too. We all help each other. :)

If you second guess your diagnosis, then get a second opinion. You have to get the problem solved on what is going on with your head and eye.

Did you see an Neuro eye specialist? That might help.

Good luck and nice to meet you.

Hi Everyone
 

Hello Everyone! So a little about me, I am 25 years old married with 2 wonderful boys who are 4 and 6.

I had abdominal pain since I was 14 and diagnosed with Endometriosis at 22 via Lap. Ive had kidney stones, many infections and pretty much always sick for the past 6 years. I had also diagnosed with IBS, Colitis, and other digestive disorders cause really no one knew why my bowel has out of control.

I had a oopherectomy/hysterectomy a year a go due to what we thought was the endo again. I had some endo and adhesions when they went in. I was hoping I would be cured after that but no such luck. Abdominal pain still occured after the surgery but much worse now.

Then I went to a new dr and she did a neuro exam and told me I had severe weakness on one side. Didnt think much of it then.

About a month ago I lost vision in my R eye but regained it 45 minutes later but its has been blurry since. I also have had tremors, muscle spasms and a number of neuro things happen since then. I have always had them before but not as intense and I nvr thought much of it, I just thought it had to do with all my other many problems.

Anyways after many tests and symptoms my dr is convinced I have MS and I see a neurologist on Thursday and will see what she says. I now have to cath myself due to severe bladder retention that became unmanagable. So I hoping to get some answers at this point I cant take much more, I am very tired and ready for some relief. Thanks for listening to me :confused:

Welcome AKMommy. You are not alone! :hug:

I too have had most of the same symtoms as you.

I also have lost vision in one eye for a short while.... but each time, it did improve! I now see out of both eyes without problem.

There was a time where I too could not pass any urine and had to use catheters, but that too has improved. I no longer have to use catheters, and if anything .... my bladder has gone the other way.

We MSers are all different. What happened to me may never happen to you, but do get your vision checked, and ask to see a continence nurse. Your local MS Society will always put you in touch with one.

Hi AKMommy, nice to meet you and I'm glad you found us. :)

You've had a lot on your plate, for such a youngster. Sure glad you had those wonderful Kidds, before your Hist.:hug:

Come on in and join us anywhere. We are Family and if you want, you are now a member.

Welcome AkMommy,

Your story is close to mine too. We all are unique. I hope it is not MS, but if it is, you will gets lots of help and support here. It is hard having all these problems and not have the answers you want and need to explain them.
I hope you found out more on Thursday's visit.

Maybe you will have to have more testing. It takes time once they think they know what you have and what you don't have. I wish you lots of luck. Keep us updated.
Nice to meet you. :)

Hi, I'm Dave
 

Hi, I'm Dave a 53 year old man, who people say, looks like I'm 43, but I feel like I'm 73. Pain and fatigue have been plageing me for years.

I live in Denver, CO. I'm originally from Wisconsin. I spent 6 years in Germany. Music is my passion and I go to many shows. I enjoy a very large variety of music. I love to discover new music. I like to try new food and see new places. I'm going to China for 3 weeks in October wich is a life long dream of mine.

I've posted most of this bio on other threads but this look like a good place to introduce myself. I'm new so I don't have any idea how often people post or respond to posts. That's why I kind of duplicated much of the same stuff on different posts. I'm kind of eager to talk with someone about this medical stuff.

I started having problems about 12 years ago and the last 5 have been awful. The worst is not knowing what the hell is wrong with me or what causes it. I've had problems with depression, anxiety, chronic pain, stiffness and severe fatigue. After all these years I'm fairly sure it's Fibromyalgia. I've suspected Lupos, Arthritus, or just being crazy amongst other things in the past. I was in the Army and eventually was kicked out in 2004 after 13 years because of my medical problems. I do receive benefits.

Anyway, I have been taking Gabapentin for about 2 years. I just got a persciption for Lyrica today. I'm supposed to stop my 1200mg 3xday and start my Lyrica (don't have my dosage available now) tomorrow. I hope it helps. I never noticed much improvement with the Gabapentin, only some mild but bad side effects.

I also take Tramadol 50mg 3xday, Celebrex 200mg 1xday, Hydrocodone 10mg 3xday, and Cymbalta 60mg 2xday.

I would like to talk to other people who have had similar problems and to people with advise. I understand that Fibromyalgia is more common amoung women than men. That's good for me because I like to talk to women more than men anyway.

I have also been reading about Low Dose Naltrexon (LDN) and it's benefits for my symptoms. Has anyone tried it or know anything about it?

I read the Heading "Hi Newby's" "Introduce Yourself"
 

I read the Heading "Hi Newby's" "Introduce Yourself" and thought this was a good place to introduce myself. I thought it was a general place for a newby like me. Now that I read more of your posts I see this thread is for people with MS. So, I guess I posted in the wrong place. Sorry, but Hi anyway and my best wishes for all of you. Thanks.

No problems Davelikesfish....

I've copied your post over to the New Member's Forum, and here's a direct link to your post: http://neurotalk.psychcentral.com/sh...d.php?t=130203

I'm so computer illterate!!! I hope I do this correctly.

Thank you for the welcome!

Anyway, I am having trouble with shots in my arms. The medicine doesn't seem to want to inject into my arm?? Does anyone have any idea why this would happen? It's a pretty new auto-injector and works fine for my other shot areas.

Thanks in advance for any ideas or tips!:confused:

http://i489.photobucket.com/albums/r...allwelcome.gif

Hi, and welcome to the MS forum. Sorry I can't give you advice on your arms--I'm on Tysabri and can't remember having problems with my arms when I was on the injectibles.

Good luck to you. Don't give up! :hug:

Hello....I'm a newby
 

Hello to you all!

I've been browsing this site for a couple of weeks now and felt a bit less lonesome, so thought I'd join. I'm amazed at the amount of support and compassion here.

In a nut shell, my condition started five months ago...was hospitalized for uncontrolled headache, double vision and seizures, within 7 days tremors started and by the time they discharged me, I couldn't walk properly. I've encountered various new symptoms such as spasms, pulsing nerve pain, tingling in the past months.

At first they diagnosed me with something called conversion disorder, but the psychologist I've been seeing is certain I have a neurological disorder. Back when I was hospitalized, the LP, Brain Mri/Mra were all negative. I've been in agressive PT for five months and my walking has gotten better, but still not normal...drop foot, tremors increased with physical exertion. Cognitively, I seem to be fine. I have been referred to the Mayo Clinic for testing and leaving in a few days. I'm scared, but anxious. Looking for the answers so that I can stare this monster in the face and tell him where to go. LOL! Really just needing answers so that I know what I am facing and can find reason in the things my body is doing. So happy to be amongst you people that are supportive and understand!

Welcome to NeuroTalk Butter. Nice to meet you. Please do join us anywhere. You will find a lot of support and friendship here.:)

New Member
 

Hi Everyone,

Was browsing the internet looking for information on painful injections (after a painful Betaseron injection) and came across this Board. Looked good, so I joined, and here I am! :winky:

I'm currently unemployed, a victim of the banking crisis, looking for my next position. My kids (2 girls, 7 and 9) call me a "clumser" when I stumble, lose my balance, or bang my head on something (clumser, as in one who is clumsy).; When I saw the "Stumble Inn", I knew I was home!

I was diagnosed with PPMS 18 months ago, but suspect I've had MS for about 40 of my 47 years. I'm looking forward to posting more, meeting all of you, and learning from everyone's experiences.

Hi Clumser and welcome to NeuroTalk! :welcome_sign: Sorry for the reasons you're here but you found the right place! Join right in, ask questions, share your ups and downs, give advice and just enjoy the company of friendly folks who share the same annoying disease. Hope to see you around the forums! :)

Welcome, Clumser..:) Yep you sound like you'll fit right in at the Stumble Inn.:p

Come on in and join us anywhere. Sometimes peeps are a little forgetful to come to this thread, but don't let that make you feel unwelcome, because you're Family now..:hug:

Hi Clumser,
Welcome! We love new members. We all understand your nickname, it's part of us too. Sorry to hear that you lost your banking position.

We're glad you found us. This is really a great place, lots of friendly people who learn from each other.

The Stumble Inn is for anything you want to talk about. A place where you can sit down, put your feet up and relax.
Nice to meet you.:)

Hi Im Jeannie, I am From Boston Ma but recently relocated to Florida :) Nice to meet you all <3

Hi Jeannie,
Welcome to NeuroTalk. I'm glad you found us. How do you like living in Florida after living in Boston? It's a big weather change.

Do you have any medical problems you would like to discuss with us. We are a very friendly group of people. :)

This part of NT is the MS forum. Do you have MS?- or being tested? You could tell us a little about yourself if you want, we love new people.

We have lots of new people, and some of us have been on here for years. Let us know if we can help you, or if you just want to talk.
Nice to meet you.