I'm Not Dead! (Thanks Pink for this one!)

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 5/23/2007 7:28 PM (GMT -6)   
Hi everyone,
l have been off the air for ages. I think I just became so obsessed with my symptoms and the lack of a diagnosis that I just stopped dropping by. I hope that some of you finally have some answers to your symptoms, I certainly still DON'T. Just before Xmas they put me into hospital to try and work out why my blood pressure was so high. I think I had every test possible and was there for a week. They seemed to get my bp under control so home I went. Well, after a week the new medication made my feet swell up and my GP checked pressure which was 150/110 so she phoned the clinic. My feet were like two balloons! Back to the clinic and another change of medication. My bp is still all over the place and the other day went to 170/110 complete with palpitations and a racing pulse of 136. It settled down but gave me a real fright. I had to go lie down, went off to sleep then felt much better. I went back to the Neurologist in February Valentines Day actually! Well, I gave it my best shot trying to explain new symptoms that had developed since I saw him last year, can't remember when lol! I now have real problems getting out of bed and standing on my feet. Pins and needles are relentless in my legs. What happens is my feet and calves are so stiff I can hardly walk. I have to hang on to everything to get to the loo. The pain is wicked! After around 20 minutes or so they start to free up and I can walk a lot more comfortably. Another new one is my right arm aches like crazy. I have noticed a definite weakness in it and pain when I pick anything up, everything feels so heavy. I have dropped a couple of things too. My GP sent me for an X-ray, nothing showed up of course! I now am experiencing some double vision but only when I am really tired. I have developed shooting pain in my right leg which goes all the way down to the sole of my foot, this really hurts and burns. Only lasts a few seconds but man does it hurt! So we went through the same old set of neurology tests. I completely flunked the heel to toe walk the plank. Seemed even harder to keep my balance! He didn't day much just ordered another MRI on my brain and spine with contrast which I had done at the end of March. So................here I sit now at the end of May and not a word from him. It got to me so much that I phoned the clinic about 2 weeks ago. They said he had been overseas at a conference and had just come back. He had not reviewed my results and would not have time to look at them until the next clinic day last Wednesday. Well another week has passed and I still don't know the outcome. I went to my GP and asked her whether she had received any results. He had written to her in February and I had to ask her to print me out a copy of what he said. NOW he has decided that I probably don't have MS and my lesions in my brain are from my high blood pressure! He said he would write to the Hypertension Specialist. Good grief, am I ever going to get off this roundabout?
.

cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 5/23/2007 8:03 PM (GMT -6)   
Sorry, my computer just went weird and I couldn't type anything!
Other new symptoms also, slurred speech, wrong words come out when I talk, tremor in my right hand first thing in the morning, the coffee could end up anywhere except in my mouth! If they leave me like this am I going to end up having a stroke? Is anybody ever going to take me seriously!!
I am just sssoooo frustrated!!!
Gotta go, catch you soon, I will be back later today or tomorrow
Cocoa

cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 5/24/2007 3:47 AM (GMT -6)   
Update from my previous post..........
Phoned the clinic and had the strangest experience with the receptionist. I rang them a couple of weeks ago and tracked down that my scan was in the Specialists review list but he was called away on emergency surgery. I understand that of course. So another week passes............he has clinic only on Wednesdays so I didn't bother them thinking that he would have reviewed the results on that day so I waited another week. Yesterday was clinic day again and I still had not received any response. After logging in and having a whinge here I rang the clinic and she asked me for my address (privacy act) and put me on hold so she could find out whether a letter had been sent to my GP. After waiting a few minutes she cam back and said " I have to do some more checking what is your phone number?" I told her ( they would already have that information as they have rung me before) and she said she would call me back. This to me was really odd! When she did call about 10 minutes later she said that the report had been typed up but can't be sent out until he comes back to clinic NEXT WEDNESDAY!!!! They said that he was yet again AWAY.
For heavens sake, that was the last excuse, (overseas conference!) How many holidays does this guy get????
Honestly, I am at my wits end. Nobody seems to take any notice of me or my symptoms which certainly have not gone away, if anything they are worse!
I am just so fed up with being given the run around. One of our sayings in Australia (joke really) Hope you get the Aussie humor "Koala Bear" How much can one person take?
I really flipped out. The power went off about 4 hours ago and when the flatmate went to check the fuse box he said everything was normal. Well, when he checked the other houses in the street a few hours later, they all had power. I was in such a mood prior I just lay on the bed and had 40 winks. Out to the fuse box after that and the power had tripped out, one flick of the switch and hey presto........power restored! That put my mood into a real downer. The lst straw is that after the power went off it has completely messed up the TV in my bedroom, I went in to turn it on and NO PICTURE! This has been the day from hell. I am going to make an appointment with my GP for next Wednesday when the Specialist is at the clinic so that she can ring him. I am sick of waiting!
Sorry to ramble on, I just needed to vent my utter frustration with EVERYTHING!
Thanks for reading this, sorry to be a pain. I hope everyone else hasn't had the day from hell that I have had..
Cocoa

cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 5/24/2007 4:02 AM (GMT -6)   
Oh dear! Spelling mistakes everywhere in my posts!!! Sorry for that, it tells me that something isn't really working in my brain.

jim-s
New Member


Date Joined May 2007
Total Posts : 13
   Posted 5/24/2007 5:43 AM (GMT -6)   

MS is such a unpredictable disease and we as people who suffer with it have alot to contend with. One person's symptoms might be so mild that they can live a "normal" life.  MS isn't affecting their life in a way that makes them dependant.  They are still independant for the most part.

But then there are those with MS whose form is much more limiting.  They are more dependant on others for help. There are many of us out there like this including myself.  Personally, at this moment in time, I've been able to accept this condition of mine and I am at peace within myself.  This could change, however, especially if my symptoms get so bad that I lose more of my "independance".

I've come to the realization that I most probably will never be cured.  That if anything my symptoms will get worse over time.  I must accept it this way or else I will go crazy over it. I believe most of the battle is won if we can remain calm with no anxiety.  It's easy for me to say this because at this present time I am calm with no anxiety. but that wasn't always the case.  I've had my ups and downs, even had to go on anti-depressants.  But gave those up because they were making me more anxious than I already was.

I've lost faith in medicine.  But for me that's a good thing, because my faith in God is stronger than ever.  He's the one that is going to pull me through this, not medicine and my neurologist. No matter how bad I get (I might get better but I'm not counting on it), God is with me, leading the way.  I know this might sound crazy, but I look upon my MS as a blessing because now I am fully dependant on God for my help.  I've been stripped of my independance.  Now my dependance is on Him.

Cocoa, I'm not preaching at you only.  I'm just expressing my ways that I have learned to cope with MS.  It's not easy.  I've given up and gave it to God.

Sincerely,

Jim


cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 5/25/2007 4:01 AM (GMT -6)   
Thanks Jim,
I appreciate the time you took to reply. I think I could cope with this much better if I could get a diagnosis of "whatever"the diagnosis is and problem is. The Specialist says I'm uncertain which just spins me out, is it this......maybe it's that.......or perhaps we should consider.......aaahhhh! Does he think I am a nutcase making up all these symptoms? They are REAL for heavens sake! He described my last visit to my GP saying "She presents with a "conundrum" ..of what?
Symptoms you dope, that is what I am feeling is anybody out thee listening?? I just sat down the day before and wrote them all down out of a book so that I could confuse him! Good grief!v I am just so FRUSTRATED NOT KNOWING, along with many of the other guys in this forum.Please, please Mr Specialist, just tell me what is wrong with me so that I can move forward, it is the not knowing that is driving me nuts!
To get Government help in my country they require a definite diagnosis before they can give you the appropriate help. As nobody is about to say well "You have...disease or condition" and we can do this as treatment or that, I am completely stressed out desperate to get some pain relief.
I don't care any more if it is addictive, I just want some pain free time, otherwise I have relentless pain from the moment I wake up until I go to bed. The only escape is sleep! I could adjust to whatever the disease is if someone could just tell me what it is! I have been like this since 2004. The struggle to get my feet going in the morning requires so much effort, I am almost stuffed by the time I walk the 10 steps to the bathroom. Going shopping is a shocker. When I come home I am completely wiped out and it takes me at least 2 days to get my strength back.
This really is the pits. I know there are so many lovely people out there with a lot more to cope with than I have, and I can only say I know up to a point how they must feel and how hard it must be for them to cope and get on with their lives.
All I can do is just hope that when I receive the report that I have a clearer understanding of what is happening, that would be a blessing!
Cocoa

jim-s
New Member


Date Joined May 2007
Total Posts : 13
   Posted 5/25/2007 4:21 AM (GMT -6)   
Cocoa,

Are there any other neurologists? Get your MRI's and find another one, if you can.

I'm not a neurologist, but it looks like MS to me.

Just do what you can do, one day at a time.

Sincerely,

Jim

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 5/25/2007 6:06 AM (GMT -6)   
Hi Cocoa,
 
    Wow they certainly are dragging their feet there!  I know it's difficult for you to get around but is there anyway you can visit the clinic personally next week?  Sometimes if you go in person they have to deal with you right then and there, phone calls can be easily put off.  Has your blood pressure been going nuts since the beginning of all of this?  Can your gp do anything to help your pain issues or recommend a different doctor?  I do hope all of this gets resolved soon for you and you get some relief.
 
 
Kimber
 
Co-moderator for Multiple Sclerosis
 
Allow Healing Well to continue to help others, clink link for details

KAS1
Regular Member


Date Joined Feb 2007
Total Posts : 161
   Posted 5/25/2007 5:19 PM (GMT -6)   
Hi Cocoa,

so sorry that you're having to wait so long.....I know exactly how frustrating it is!!! I find it so hard when everything around us carries on like normal.....and we are left hanging! If you're like me you probably can't think of anything else!!!!!

I sincerely hope that you get some answers on Wednesday...if not before!

Let us know how you get on!

KAS
Not diagnosed
 
Neuro says he'd "bet on me having MS"
 
IF YOU CAN'T SEE THE LIGHT AT THE END OF THE TUNNEL...
GO DOWN AND LIGHT THE BLOODY THING!!!


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 5/25/2007 5:45 PM (GMT -6)   
Hey Cocoa

Good to see u again, tho i'm sorry for the reason. I agree with Kimber, can u go into the office personally? That is usually the best way to get their attention. Geez...u'r really getting the run around! Hang in there and please let us know how u'r doing.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 5/29/2007 2:07 PM (GMT -6)   
Sorry to take so long to reply everyone........having trouble with my new keyboard. When I type in here after a while the letters are all wrong! I think I have solved the problem. If I stop short and the post doesn't make sense, it is the keyboard.........not my brain!
Thanks everyone for your support and hey Rhonda and Kimba, so nice to talk to you guys again. How are you both? Rhonda, any answers yet? I wasn't able to get to the clinic last Wednesday and as you know by my post the report hadn't been signed? Today is the day......clinic day again, Wednesday here. I have made an appointment with my GP, can't get in until Friday but I know she will ring the clinic and get the report faxed over, she sure knows how to get responses from Specialists. Last time she rang the clinic he was there and took her call straight away, she couldn't believe it! Her name is Neena and I have been going to her for over 10 years now. She has a very strong personality, a no nonsense sort of Doctor, she has moved practice about 6 times and I have followed her. I live a long way from her practice but I will continue to see her, have been to others and they just are not as good as she is. I am her only original patient that still goes to her. She tells everyone in the practice. They can't work us out, we go on with a lot of banter and yell at each other, but we have great respect for one another. Patients and the staff think we are having an argument and they give us strange looks, however we never mean it!
Anyway, back to my condition.........I have a second opinion appointment coming up on the 8th of June at the P.A. Hospital so I will gather up my MRI scans and see what they have to say. I want a second opinion, this is just dragging on and on. I don't care if the Specialist at the hospital thinks my Neurologist here is GOD I still want another opinion. It would appear that he is overloaded with patients and I am probably just a nuisance to him. If my condition was diagnosed then perhaps I would get some action.
Thanks Kaz and I hope that they don't leave you forever in limbo land. "IT" is the ONLY thing you can think about........if it is not MS then can someone please find out what it is so we can get some treatment that will help our condition....you know...chronic fatigue, pins and needles in limbs, pain and muscle spasms, intolerance to heat, forgetting everything, slurred speech and chronic pain........can we just PLEASE TRY something, anything to see if it helps control the pain? That is by far my worst symptom, the pain in my face, then in my legs, in my arms, numbness in my feet and hands followed closely by chronic fatigue.
By the way, I tried to tell you an Australian saying and I notice now that I have re-read my post that it didn't make any sense, oh dear!
What I meant to write was "How much can a Koala "Bear?" In other words, how much do they expect you to put up with? I know now that you will understand what I tried to say a lot better. We are a strange bunch down under with lots of odd sayings and jokes that probably only other Aussies would understand! Anyway, best get going, take care everyone and talk to you again soon.
Cocoa
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, August 23, 2017 9:13 PM (GMT -6)
There are a total of 2,859,163 posts in 313,737 threads.
View Active Threads


Who's Online
This forum has 155315 registered members. Please welcome our newest member, nichols717.
440 Guest(s), 4 Registered Member(s) are currently online.  Details
PeteZa, ppm guy, Serenity Now, nichols717


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer