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Posted 8/1/2007 4:29 AM (GMT 0)
Hi all, I have been slack and haven't been in to visit everyone for a while. I think I have just been so annoyed with everything that I didn't want to spend another minute thinking about my condition. I had obtained a letter that my specialist had sent my GP after I saw him at the clinic stating that I had a "conundrum" of symptoms that were somewhat similar but not "typical" therefore he thought that my lesions were caused by my high blood pressure and not MS.
Off I go and have the MRI and receive a letter to say that there were no new lesions showing up after being injected with gadolinium which I believe only shows up recent lesions of approximately one month old. He then sends me a letter and states "my disease is currently in remission."
Then about 3 weeks later I get a letter from him ( he teaches at a University here) asking me to take part in a survey for patients who have MS as well as family members to see if there is any connection in auto immune diseases in other family members or there is any connection to MS.

What? I'm not supposed to have MS!

I visited my GP yesterday, and she had received the same letter. I really blew a fuse and she said I am sick of this and rang him up while I was there.
I had to really try and listen in and read between the lines. I did hear that I do have additional lesions in my brain but not recent. My MRI before the last one was 12 months prior. She was all giggly with him which normally she isn't, (perhaps she is a bit keen on him), and stood by whatever he said.He told my GP that he now thinks I DO have MS but he refuses to diagnose it as such as he is not 100% sure!
Oh God I can't tell you how frustrated I am.
I got another referral to see him next week so if I am revved up enough I think I will let him have it. I want to look at my MRI's myself, read the reports from the radiologist, (they are always more informative than anything the Specialist sends), and take them to my new appointment in September in a large hospital in Brisbane. My GP said he couldn't stop laughing because he had my scans in front of him at the University ( not the clinic )when she rang.
What was he doing with my scans at the University anyway, that is not where the clinic is. I guess he was showing them to his students, nice of him to ask me! Anyway, I DON'T THINK ANYTHING about MY CONDITION IS AT ALL FUNNY!
Next week after seeing the Neuro I have to go into hospital for an endoscopy of my esophagus as I have reflux and have had it for years and it is not being controlled very well. That should be lots of fun!

I am wondering if anyone here is going through Menopause as I am and I am almost a mental case! I have high blood pressure, my GP thinks I should be dead by now it is so high, (160/110) therefore she won't put me on HRT. I would have at least 20 hot flushes a day which are driving me crazy. I also am having major wild mood swings. I have turned into a complete monster and I lose my temper at the slightest thing. Thankfully I am single and home by myself so I don't inflict my misery on anyone else. My poor cat cops an earful but she still loves me just the same. She is nearly 17 years old.
Can anyone suggest "ANYTHING" that might help with the hot flushes, I just hate them, I am sitting here now red faced and sweating and in about another 5 minutes I will be freezing again!
I will consider anything to try and minimise looking like an over ripe tomato! HELP HELP HELP PLEASE SOMEONE!!!!!
Cocoa
Posted 8/1/2007 11:07 AM (GMT 0)
gday Cocoa,
I am sorry for your troubles. The neuro sounds like an idiot. I noticed that you are a Queenslander, as am I. Fight hard for a diagnosis. Your future depends on it. Have you had an LP or Evoked Potentials? These might help with diagnosis. One last query - is there a chance that your reflux is linked to MS? I too suffer from debilitating reflux (despite medication) and it has been suggested to let my neuro know as sometimes leisons in certain parts of the brain cause reflux
Annie
Posted 8/1/2007 2:47 PM (GMT 0)

Hey cocoa, I have to laugh.  I too had the hot flushes etc but my doctor turned me on to soy milk every day and black cohosh tablets.  I am hot flush free.  Since about 1 year now.

Also about the neuro, at least you are getting MRIs.  I haven't had one since 1999.  We in this part of Canada are so back logged waiting that some of us don't even rate an MRI to see what is going on.  My neuro says she can tell by doing the standard tests that the disease is progressing and I don't need an MRI.  It is not urgent in her words.  But now I have new symptoms in this MS hug thing and I am told it could mean I have lesions on my spine and when I called to make an appointment with her, she called me back and basically told me no, that it was not and she hadn't heard of the MS hug and that I didn't need an appointment and that was that so there.

So in other words the patient knows nothing and they know everything.  Right.  I am angry today and upset also.  I got some news yesterday and I am not happy.  Neither is my GP.  He is on my side, so don't take it.  Stand up for your self and fight for what is going on in your body.  You know when something is wrong in your body more than anyone else.  Write down your symptoms on a chart day by day and take it with you to your appointments. 

Ok, I am done spouting off for now.  ha ha

Karen

Posted 8/1/2007 6:22 PM (GMT 0)
Hey Cocoa and Karen

Wow ladies!! U poor guys are having a real go of it! I'm so sorry! Hang in there, both of u, and keep pushing hard!! Don't back down until u'r satisfied that u've been taken care of. As for the hot flashes, i went thru a bit of that at one point and luckily for me it went away on it's own and quickly. I did try an over the counter product called Estroven that helped a LOT. I only used it for a few months tho..once the prob ceased i ended use. At one point, another member here suggested that menopause could cause MS type symptoms. I'm not sure how true that is, but i did find (thru some research) that some of the symptoms can be crossover. I'm really intrigued about the ms possibly causing reflux too Annie! I was recently dx'd with GERD and Barrett's Esophagus...and have previously had no symptoms. Seems very odd to me. Maybe i'm not offering any solutions here...but at least some connection possibilities. Boy the nervous system is complicated!! Best of wishes to u all ladies! I'm thinking of u and hoping u begin to feel better and get some attention by the docs!! Keep on and dont' get quiet! Please let us know how u'r doing...and how we can help...and spout off all u like! ;)
Posted 8/1/2007 6:27 PM (GMT 0)

Thanks Rhonda, it sure helps to have a place to let loose sometimes.  It is so frustrating to have some issues and not have the doctor listen and understand.  Man sometimes I could scream.  But anyway, ha ha, thanks.

Karen

Posted 8/2/2007 8:09 AM (GMT 0)
Hey everyone, thanks for the input! We have a time lapse here, it is now 5.50pm here 2nd August. Sorry I have not logged in sooner. Have been pacing around the house trying to keep the cat quiet and calm down........so far it hasn't worked!
about that reflux...... I know I read somewhere that it can be a symptom of MS after all the good old brain box runs the whole show right?

I did mention this to his holiness the Gastroenterologist and he said "no"........well I don't believe that for a minute!
I have been in the blackest mood today.........broke out in a soaking sweat at the chemist, I sat on my reading glasses and broke them beyond sticky tape therapy! I was just so embarrassed I apologised to the assistant and honestly the sweat was just pouring down my face....Oh.......sh..........t

Thanks for the over the counter Menopause tabs, I am not sure what I am able to take with the high bp.....the pharmacy assistant said I should check with my Hypertension specialist first as some of the natural treatments push up your blood pressure.

Annie, I have had a LP which showed nothing but not the other test you mentioned....Evoked Potentials??? What is it sorry for my ignorance but I haven't heard of it.
I don't know whether I have lesions in my spine as the Neuro God hasn't mentioned them. I will be on his case next week. I will write everything down again and he will probably laugh at me as he does and say the same old same!
I am sure they all think we are aliens and they can't tell us all their "secrets or we might go crazy! Well, I am already crazy. The way I am at the moment I am about ready to bite his head off.........I wonder if he will think that is funny? lol!!!
I have been ssoooo ANGRY today, and I am still wandering around ready to pounce.........look out everyone!

Thanks guys for your advise, nice to hear from everyone.........I probably won't be able to log back in until tomorrow....

Hugs to you all for caring about me.......nobody else does!

Cocoa
Posted 8/2/2007 10:15 AM (GMT 0)
Hey Karma,
That is a way too long wait for an MRI, I thought I had to wait a long time! I think the Neuro at the hospital I attend (public hospital) from time to time takes on public patients however his clinic is a private practice clinic. This guy is an Associate Professor of Neurology and teaches students at Griffith University I think he likes to have a few guinea pigs to study..he certainly doesn't treat me like a human! They treat you like you know nothing and when I describe the symptoms I am suffering he just shrugs his shoulders and keeps writing. I don't know whether he thinks I am nuts or he just can't be bothered trying to sort my problems out.
The medical professionals here seem to think he is some sort of Guru of Neurology, and , well he probably is but that does not mean that he gets it "right" every time. I have had lots of time to research MS and looking at the list of symptoms I consider that I have around 90% of them...so how does he come up with I have "too many" (conundrum) symptoms and they are not "typical?" If anything my symptoms scream out to me that I have MS with only a 5% chance that I don't! Umm, lets see, chronic fatigue, going shopping knocks me flat for at least 2 days. Pins and needles in my legs and feet and now my feet burn as well. I can't walk when I get out of bed normally, the pain is so intense in my lower legs like a really bad cramp. It hurts to put my feet down and lift them up...isn't this a spasm in my lower legs? Chronic facial pain (trigeminal neuralgia) as well as migraine headaches, slurred speech and also speaking the wrong words from what I meant to say. Wavy lines in my eyesight first thing in the am. I can see clearly in the centre of my vision but outside that circle it is blurry and distorted. Every now and then I see what looks like a red spider walking up the wall. Disappears when I close my eyes.
Posted 8/2/2007 10:43 AM (GMT 0)
Sorry all, my keyboard just went nuts and started typing wrong letters, perhaps it has early stages of MS.....lol!!!
Anyway back to my conundrum of symptoms! I have developed a right hand tremor, again first thing in the morning. I notice that I find it hard to hold my cup steady. Another thing I have noticed is that when I take my tablets or hold anything like a pen or something small I drop it. I don't feel that I drop anything but the next thing I know the tablet or pen or piece of paper is on the floor. I don't know what this is? It is even more weird that I don't feel the sensation of dropping anything. I have had also some loss of bowel and bladder control, only minor thank goodness. My short term memory is completely shot. I forget everything and anything unless I write things down, I forget. How am I doing so far? I fail walking the plank big time, completely topple over like I am drunk. Can't keep my concentration on one thing my mind wanders and I end up leaving everything half done because I have forgotten what I have started and have moved on to something else.
OK so if this is not MS can someone tell me what it is???

We just have to hang in there and wait wait wait for an answer..........

Cocoa
Posted 8/2/2007 1:50 PM (GMT 0)

Hi cocoa, just hang in there.  I started having symptoms in 1990 and the neuro told me that my symtoms were just not "text book" MS so after 8 years of not sure MS and many tests,  I had 2 MRI's one in February 1998 and one set in November 1998.  Then I was called and asked to come to the neuro's office on a Saturday morning at 8:30 in the morning.  Well that terrified the life out of me.  I was getting ready to leave for Florida for Christmas in a week.  My husband and I walked into his office and he told me that there was no brain tumor but that there was definitely something wrong.  He still would not say definite MS.  We will watch and see.  Then after a not great winter and a huge relapse of about 4 months of shaking and pain and tingling and fatigue and pins and needles and blurred vision and a whole mess of other things, I saw him on April 15, 1999 and he finally said "Well, you know when a person such as you has definite MS, you will have these type of relapses from time to time"  So I immediately jumped on his words and pinned him down and made him admit that I do have definite MS and that it is Relapsing Remitting MS. 

So it may take time and a lot of frustrating going for tests and doctors but in the long run if it is MS, you will get the diagnosis eventually.  Be patient and try to stay calm.  It is hard sometimes but stress makes symptoms worse.

We are here for you to vent anytime at all. 

Karen

Posted 8/2/2007 11:23 PM (GMT 0)
Thanks Karen,

I don't feel so alone with all the great people in here including yourself of course!

If you have been going through this since 1990 boy, do I have a long train trip ahead! "All aboard the limbo train!" You may see reference from members here to being in limbo and someone came up with the limbo train. As I was typing this to you I completely forgot how to spell "aboard" I actually had to reach for the dictionary! I feel like crying, in fact I am shedding a few tears now, frustration is what sets me off. I just can't believe that my comprehension has taken such a nose dive. I was always such a good speller articulate and enjoyed writing poems, in fact writing anything. Now I can't even spell simple words and talk like a drunk! Thank God for "spellcheck" I know stress makes all my symptoms worse and I am on medication for that. I am having big financial worries as well and I don't have anyone to fall back on and that really scares me, I could lose everything! I don't have a house, I share a house and pay rent.
Thank heavens you finally pinned your doc down. A slight slip of the tongue and bingo there is your diagnosis, a little like the survey letter that my Neuro sent me. I believe that they do really "know" but they just are too afraid to tell you in case they end up wrong or get the type of MS wrong and the patient takes them to court for malpractice. I will give it my best shot next week and see what he has to say for himself!

Anyway had best get going, I have to go down to welfare and put in my paperwork. Catch you all later on.

Cocoa
Posted 8/3/2007 1:59 AM (GMT 0)

Hey, cocoa, keep trying to write your poems.  No matter what.  Keep trying.  It is the effort that matters.  And every day you can go back over them and do revisions if you want.  But never give up.  You know, I wanted to write that great novel.  Now I am 50 years old and done.  You know how that feels.  To be that old and say you are done.  Well darn it I am NOT done.  You have given me the inspiration to NOT be done.  I am going to write down my story and hopefully someone else will be helped by it.

You say you are having financial hardship, ok, so what can you do about it?  You need to look around and see what kind of assistance there is.  You said something about going to Welfare.  Well that is a great start.  That is what they are there for. 

No matter what happens you need to figure out if you have MS and once you have the diagnosis then doors open for medications and treatments that help.  Physiotherapy and even psychology, yes, even that.  Emotional therapy, depression is one major headache with this disease.

You keep at your doctor and don't stop till you "run out of steam" to use the train terminology and your english skills are great and don't let anyone tell you different.  You sound great to me.  Keep talking.

Karen

Posted 8/3/2007 5:05 AM (GMT 0)
Hi Karen and thanks again,

I have had the day from hell with welfare but wanted to let you know that I am also fast approaching 50 next April. I now have to apply for a disability pension after lots of tears at the office and at my Doc's surgery today....long story.... however as you seemed interested in my poetry here is something I wrote which I posted here some time back. My niece was diagnosed with breast cancer and I made her a card and sent her a very cute but small teddy bear which I named FLASH. I tied a pink bow around his neck and he travels with her when she goes for treatment to the hospital. She has lost one breast and is currently going through chemo and radiation.
So you don't have to try and find it on the site.....( I had trouble! ) here it is....I should get one just for me I think!! Talk to you again soon.... Cocoa



To everyone here,

I thought that the members here would like to read this. My niece was diagnosed with Breast Cancer about 2 months ago. It was such a shock, she is only in her early 40's. As we are so far away from her I tried to think of something that may help her cope. She had one breast removed and is now starting chemotherapy. I was in the Supermarket one day and at the checkout was a box full of small teddy bears which were to raise money for Red Cross here in Australia. I immediately thought of her, purchased one and decided to name him Flash. I made her a get well card and wrote a little poem about him. I bought a pretty pink ribbon and tied that in a bow around his neck. Pink ribbon here signifies breast cancer awareness. I sent him down to her and she took him into hospital the day she had her breast removed. I thought that this may help someone else who is struggling with any disease, so, here is the poem I wrote for her, I hope you like it. Cocoa


FLASH


F: Sometimes there will be Feelings
Of Frustration and of Fear
When you start to feel these things
Please just hold him near

L: Learning, Leaning on, Letting go,
He knows about these things
Please make sure you tell him so
We know he’ll give you wings

A: When you’re Angry or Afraid
That your world will fall apart
We know that he will comfort you
He has our love within his heart

S: When other feelings come along
Like Sadness Scared and Sorrow
He says he will make sure you know
There is always a tomorrow

H: He promises to speed your Healing
And restore your faith and Hope
“Ssshhh” we heard him whisper
“I promise I’ll help her cope”

He’s so very cute and cuddly
Unruffled soft and calm
Yet he’s still just small enough
To hold within your palm

So we want you to remember
When the going gets too tough
Put him in your palm and hug him
Love will always be enough
Posted 8/3/2007 4:00 PM (GMT 0)

Now, cocoa that is what I am talking about.  That was really good.  You need to put things and feelings down on paper. 

Hey, I am on disability pension, so what.  There is life after that you know.  Things will get better you just have to believe.  And keep writing.  It does help.

Breast cancer is a horrible thing.  My mother in law died many years ago from it.  Horrible, she wasted away so terrible. 

Take care and keep strong.  Write and write and put your feelings in to your poems and I would like to read more of them.

Karen

Posted 8/3/2007 7:24 PM (GMT 0)
Hi, cocoa I think that poem was very good, you should keep on writing, I read Montel Williams book and it was great. He talked about all these mind exercises he promotes to help keep your mind strong. I really can't remember all of them without having the book in front of me but it all made sense. I need to start trying some of them, I feel my short term memory is shot at this point, and I have trouble everyday at work trying to keep my mind on one thing and remembering what I was working on 5 minutes ago. Its very challenging, I'm afraid its going to cost me my job someday soon.

I would like to share my past couple of years with you guys if you don't mind. In October of 2005 my father got diagnosed with esephagial(don't know how to spell this word) Cancer. He had major acid reflux for like 6 years. This was very devistating to our family, seeing he was the backbone of us all. Well anyway he got on Chemo right away and did radiation treatments as well. In April of 06 the doc said is tumor looked like it stoped spreading and wanted to do a major surgery to try and remove it. Well he went into this 7 hour surgery, with our whole family there to support him and the doc came out 4 hours into in and said that they couldn't go any farther because they tumor has spread again, He said the MRI results he looked at before the surgery he saw white spots and thought it was scar tissue, wasn't scar tissue it was acutually the tumor spreading. So they didn't get to take out the tumor. The next 4 months after the surgery he lost alot of weight and became really sick. he had a feeding tube and all. In September 06 my son was born, and when he came out he did breathe for 9 minutes. It was hell, my dad was there for support but was freaking out. They finally got him breathing-Thank God. He ended up having bad acid reflux for the first 5 months, puking up everything that he took down. It was a nightmare. Then October 8 of 06 I got a call at 3 in the morning that my dad had died, from a massive heart attatck,right in my moms arms. She was trying to revive him. They took him to the hospital anyways were we all came up there and saw him. This was the worst day of my life. So the tornado didn't stop there. Thats when my right eye started going bad and I finally went to see a eye doc, she looked at my eye for a while and told me I have some kind of growth behind it and it could be a Tumor. I freaked out seeing I just lost my father. Then came months on months of exams and another flare up then finally the diagonsis of MS. This is very depressing to me to think back on all this but sometimes it good to get it out. I need to be strong for my Kids and Wife and stay positive about this messed up and twisted diease. I feel if more people stand up and do little things to try and make people more aware of MS, and we all stay positive that one day they will find a cure. Thanks for reading this.

Talk to you soon.
Posted 8/4/2007 8:39 AM (GMT 0)
Hey Tertle and Karen, just a quick note as I am off to bed. Thanks for your encouragement Karen, it means a lot. So sad about your mother in law, it is terrible to watch someone waste away before your eyes. I used to work in aged care and came across it all the time. Tertle, your poor Dad, I have seen others with this type of cancer and it is just awful. How wonderful though that he passed over while he was in your Mother's arms, I couldn't think of anything better than that when one goes. My Dad died in 1990 from a massive heart attack. He had taken my brother's two dogs for a walk as he was staying with him as he just came out of hospital after surviving a previous heart attack. He went walking at about 10.30am. My idiot brother only noticed him missing at about 2am. Long story but he suffered another heart attack on the footpath and died before he hit the ground. He was 71. A passing motorist found him at about 1pm and called the ambulance. The two dogs were still with him and the youngest Tilley was sitting on his back and wouldn't let anyone near him.
Stay positive, you all have so much more to live for. I agree the more we can make people aware of MS and the effect it has on everyone the better.
Catch you soon,
I'll find some more of my poems.

Cocoa
Posted 8/4/2007 2:57 PM (GMT 0)

Wow, isn't that the truth.  I think cancer is so horrible.  We with MS have a lot to deal with but when you see people going through the cancer treatments, it gives me a feeling of such gratefulness that I only have MS.  How lucky am I to only have to deal with this. 

I used to be embarassed to have MS.  I didn't want to talk about it or go out because I was ashamed like I had done something wrong.  Then I happened to run in to someone who had MS and wasn't like me at all, who was proud and not embarassed to talk about her problems dealing every day with bowel, bladder, walking, talking, shaking and all the other fun things that we deal with day to day.  Well that put me right.  Now I will talk to anyone and everyone who will listen and even a few who won't.  ha ha.

And yes, I have started writing that book, just for myself, to write down what I can remember about what lead me from the very start of every prickle and pain to this point right now.  The day the diagnosis came, the tests, the triumphs, waking up March 2, 2006 not being able to move my legs and how scary that feeling was, all of it. 

You know we need to keep talking and telling everyone and informing people about this disease until there is a cure.    Take care everyone.  Keep in touch.

Karen

Posted 8/5/2007 1:26 AM (GMT 0)
Hi Karen,
Just wanted to acknowledge your post. I am about to go out to the shopping centre, it is 11.20am Sunday here. When I come back I am going to re visit all the MS websites and print out all the symptoms and hand them to "his holiness" on Wednesday and ask him to explain why my symptoms aren't "typical"....Then I am taking a copy of the letter he gave to my GP and the "survey letter" he sent asking me to join in on a research project into MS with a please explain! Then when he fumbles about again I am taking all my MRI's off him and am taking them for a second opinion in September.

Catch you after, take care

Cocoa
Posted 8/5/2007 1:36 AM (GMT 0)

Hi there.  Fantastic.  As I told you before, it took me years to get a diagnosis and thinking I was crazy.  You get to a point where you start to think that you are a hypochondriac or you think the doctors think that.  At some time you have to ask yourself, when in the heck is someone going to believe you and take you seriously and dig further to find out what is going on here.  At the rate I am going, I won't have any idea about this chest pain until I get back from seeing my girls and grandchildren in mid September.  I just hope I don't have any problems while I am travelling.  These plans have been made for just about a year now and I can't change them.  It would just upset too many people and be too disruptive as we are also moving some furniture with us for one of our grandchildren. 

But you go in there with guns blazing, rhetorically speaking of course, not literally, ha ha, and arm yourself with all your information and if you don't get the answers you need then walk and get a second opinion.  That is your right.  Keep digging until you are satisfied.  Let me know as soon as you know anything.  I'm here for you to let it all out or just talk, whatever you need in the way of support.

Karen

Posted 8/5/2007 10:43 PM (GMT 0)
Hi again Karen,

I haven't done my research yet as I was a bit sidetracked yesterday, however I am going to get stuck into it when I log out here. I found another one of my poems. You may find it a bit sad as I wrote it when my cousin died, he was in his 80's. It was around 2 months ago now. He is survived by a daughter and son and lots of grandchildren and great grandchildren. It was very sudden and his daughter took it very sadly. I made her a nice card hoping it would bring her some comfort. I didn't know it before his funeral but he used to have an interest in racing pigeons. When I made the card I included a photo of a white pigeon in it. At the service they had around 12 white pigeons which the family let go. How freaky is that? I am unable to copy it into this post, too big, but here is the poem I wrote for the family.

I looked up at the moon and the stars
Searching, reaching out,
Trying to find you....
I called out loud your name,
Are you out there somewhere?

Suddenly a soft breeze rustled the trees
I felt it gently touch and kiss my face
It was then I knew
You had not gone away,
You were still here loving me
Living in my heart.
Sweet Dreams

I didn't let her read it on the day of the funeral as I thought it may upset her too much. I hope that she found some comfort from it. It is always such a sad time when someone dies, especially your parents. Both of mine are gone now, my Dad died in 1990 and my Mum died in 1991. They were the most tragic years of my life. Naturally, like anyone else I still love and miss them every day. Sometimes I just wish I could talk to them, however I do talk to them in my mind, it seems to help. I can still cry at the drop of a hat over both of them, they were wonderful loving parents and I was so lucky and so blessed to have them in my life.
A researching I must go to get ready to let this Neuro have it on Wednesday. I will let you know the outcome.......

Cocoa
Posted 8/6/2007 2:39 AM (GMT 0)

Oh, my gosh, that was beautiful, I honestly have tears in my eyes right now.  My parents are both very much alive and well but I so feel your heartbreak and that you miss them.  I don't know what I will do when mine go.  It will absolutely devistate me.

I will be thinking about you on Wednesday and hoping you get the information you need.  I sure wish these doctors would understand that we deserve to be treated with respect and that this is our lives they are dealing with and not just another patient in their day to day activities.  I am in so much pain today that I have been gritting my teeth all day and my jaw hurts.  My back and chest and up my neck is so tight and full of pain that I almost called the ambulance again today as I couldn't catch my breath at one point.  The pain was just shooting up my chest on the left side of my middle chest area and up into my chin and then stop and tense right up and squeeze right tight all around the whole chest area and into my back and into my neck and start all over again.  I have explained this to 4 different specialties of doctors and no one can figure it out so what more can I do?  Except live with it.

Anyway, let me know how it goes with you and remember to breathe.  ha ha  Take care

Karen

Posted 8/6/2007 5:18 AM (GMT 0)
I just popped back in to the forum and read your post Karen. That is terrible that you are in so much pain. Sounds like you have been tipped into the "too hard basket" Don't worry, there are lots of us in here swishing around in amongst all the discarded paper!

You take care of yourself and if you continue to feel that way, ring the ambulance, nobody should have to put up with pain like that. Not being able to breath is really scary, are you perhaps having a flare? Maybe you should ring your Neuro and let him know what is happening.

I'm glad you liked my poem, I hope it didn't make you too sad. Just remember that our loved ones only ever leave us in the physical sense but are always with us in our hearts. I am pleased you still have your Mum and Dad, that must be such a comfort to you knowing they are there for you while you are going through this awful time. I talk to my Dad all the time when I am alone, I know he is watching over me and when my time is up he will be waiting for me, we were very very close.

I have been flat out researching the symptoms of MS on as many medical sites and MS group sites that I could possibly find that the Neuro would see as credible.
I printed out the list of symptoms from all of them, highlighted all the ones that applied to me and they are going with me on Wednesday. I intend to put them under his nose and then ask him to explain to me why my symptoms are not typical when all these sites have listed them as symptoms and I actually have them! Would he like me to stand on my head perhaps?
In this thread I brought up the possibility of MS being a contributing factor in GERD disease. Well I found a site that listed the part of the brain that could cause an increase in symptoms of GERD here is the link
http://www.mult-sclerosis.org/gastroesophagealreflux.html
Notice it is a multiple sclerosis.org site? Anyone who has access to their MRI scans can check this out, there are lots of images on many sites which show the lesion that affects this part of the body. I think sometimes we know more than these so called specialists. If I can find all this out why can't they?
When I asked the gastroenterologist whether MS could have anything to do with my increase in symptoms of GERD he said "NO"
I will ask his holiness the Neuro Guru the same question, then I am going to shove this paper right up his nose and then do the same to the Gasto nerd on Friday!
Honestly, just because they specialise in one particular area they seem to see that part as separate from the rest of you. What sort of stupidity is that? The old brain upstairs runs the show in every way, why wouldn't it be connected, every other part of our anatomy is for God's sake!
Phew, now I feel better.
On Friday I will wait until after I have had the procedure so he doesn't give me a hard time! They could do anything to me while I am out to it! I didn't like him when I met him I found him rather obnoxious and down right rude so I won't antagonize him too much!
Thank you for caring, I care about you too, and you take care also, don't ignore your symptoms, stand up and shout! You may hear me yelling from here on Wednesday as I think I am going to have a full on show down with the Neuro

Cocoa
Posted 8/6/2007 6:20 AM (GMT 0)
Go Cocoa, you rock! Give the neuro and gastro heaps!!! about time we "ORDINARY" folk told these drs to stop playing god. I am so interested in the MS reflux link. Thankyou for your diligence in searching it out. Maybe these drs will learn something from the plebs for once.
PS - found out today that my neuro appointment is 26th October. I sincerely hope I don't get the wacko guy you are about to tell off. I'm already scared that I wil be fobbed off for having "imaginitis".
PPS - its only taken 5 months to get an appointment to see a neuro here with fabulous QLD health. I hope its not another 5 months for an MRI
Have a great day,
Annie
Posted 8/6/2007 8:34 AM (GMT 0)
Hi Annie,
Where abouts are you in Qld? You will have to tell me so I know whether to give him a double dose or not just because you will have to see him later on!
You have until October and he won't suspect a thing! My second appointment ever with him after my first MRI was 14 months!
This is not the best State to be in for treatment of any sort by anyone at the moment. I was just watching the news.....2 Specialists at the Prince Charles have quit. One Specialist from England (heart and lung transplant unit) has not been here very long and said that the "conditions he was working under were "sub-standard" and the other a Senior Doctor in the same unit is moving on to an "administrative role." He said if he couldn't be included in the actual heart and lung surgery then he was wasting his time.....What? In other words some stuck up higher up has shafted him and he has been demoted. He said he was moving on to a more "challenging role" Oh, really? yeah, right! What a load of b.... I bet he was told to say that!
Thanks a lot Mr Beatie you sure have made this state a place that most people DON'T want to live in! Our health department is not even up to third world standard. The only ones getting anything out of the health department here are the overpaid bureaucrats and the hangers on and "stuff the patients"
All they care about are themselves. The nurses etc are tops but really, who is running this circus? Let me know Annie, you have 1.5 days to fess up!

Cocoa
Posted 8/6/2007 2:00 PM (GMT 0)

Hi, cocoa, boy I pity that neuro, ha ha.  He is going to get an ear full.  Wow.  Thanks for the web site.  I also am going to do some research at it.  I am going to look up this esophageal spasm that they keep mentioning as well.  The brain and its wonderful way of dealing with things is mystifying and I can't see how these neuros think that they know everything when scientists are still trying to figure it all out.  If the neuro know it all they why don't they have a cure yet huh?  Tell me that. 

Well, I had a bad night but not too bad today.  So far that is, but it is on 11 in the morning.

And Annie, you be glad you have to wait only 5 months for an MRI, in Canada at least here where I live it is 18 months.  We have a mobile MRI and share it with another City.

And cocoa, I have tried calling my neuro about the pain and she calls me back and says that it has nothing to do with MS and to call my regular doctor or to go to the emergency department.  When I go there they just give me morphine and some pills and send me home with instructions to contact my doctor.  So what is the use?  Really, I am just chasing my tail.  I guess I am just going to have to diagnose myself and then force the issue with my doctor when I find out as close as I can.

Pretty bad, eh?

Catch you later.

Karen

Posted 8/7/2007 9:43 AM (GMT 0)
Have been to the optometrist today to get my eyes checked out.
He did a photo of the back of my eye and a field of vision test. Everything looking ok except my right eye which has a little too much pressure in it and also a bit of a small area in my peripheral vision that he wants to keep an eye on and relates it to ms!
He is giving it to me on a cd to give to the Neuro Nerd tomorrow. I will pick it up before my appointment, that will be something else to shove up his rather large nostril I am a little apprehensive and a tad worried about tomorrow but I still intend to stand up to him and let him have it.

Karen, I hope you are feeling better now, not sure what time it is in your part of the world but it is 7.35pm here and I have just finished tea and am off to try and get some sleep. I would hound the crap out of the hospital, even if you turn up 4 times a week, surely they will get sick of that and contact your Neuro? Don't give up, you don't deserve to suffer pain like that, someone should be following up on your condition, don't they make you want to scream. If you are anything like me you don't like to complain. The trouble is that doesn't get you the help that you deserve.

Annie from Queensland, come on..... where are you, don't chicken out on me, let me know where you are in the Sunshine State? I promise not to mention your name...........!

Hey everyone, have a great day/night where ever you are

Catch you all tomorrow sometime unless I have strangled the Neuro and they have locked me up!

Cocoa
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