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

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?
.

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

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

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

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

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