Well I finally got the verdict

[SAISAY]

The verdict is that all the medicos haven't got a clue what is wrong with me, they call me a conundrum.
One thing I do know is that I do not have MS.

I haven't got any inflammatory markers but for some unknown reason, if they cut down on the prednisone my vision goes down dramatically.
My eye specialist has no idea why the prednisone works but as long as it works, he is happy.
I love that man, he is one of the few specialists who has never forgotten that it is a person he is seeing, not an illness or a symptom. I get rather testy when they stand around and discuss me as if I have suddenly gone invisible.

The other doctors are unhappy because the dose is too high for long term use. I ended up telling them that you can put my body in a wheelchair but you cannot do that to my eyes and what's the good of being able to walk around if I cannot see where I am going? They didn't answer that one.


I went for a nerve conduction test. They tested my legs but I don't get that result until I see the neurologist on 16 January, in the meantime I just have to live with the loss of sensation and pins and needles in my legs.
They refused to test my arms because "they did 2 tests 5 years ago and they know what's wrong with me". Pity they never told me, all they told me was not to lean on my elbow when I sit at my desk.

Apparently the 2 injuries I have had to my left shoulder and the fall down the steps, the fractured vertebrae, the trapped nerve and the bulging disks in the last 12 months are irrelevant and there is no reason why my neck and face has gone numb. Well that's according to the "doctor" who did the testing, he told me "that's clinical and has nothing to do with this testing."
I have written myself a long letter setting down all the questions I have to ask the neurologist in January.

[wheelinround]

Text book Quacks who are blinder than you could be without the meds.


Hope a resolution is coming your way ASAP.

[droog]

Hi SAISAY,

I have absolutely no idea of the background of your symptoms but a number of years ago I was struck with loss of sensation and pins and needles in my legs. It had many doctors stumped for a while.

I would not be waiting as time can make a big difference to your final outcome in some cases, in the case of Transverse myelitis the sooner the diagnosis and treatment the better the chance of full recovery.

My best move was seeking a second opinion after the first doctor told me to come back in a few weeks.

Best of luck, Dave.

[SAISAY]

Thanks droog
I am seeing another doctor tomorrow.
This thing is driving me up the wall.

[Mulgabill]

Thanks droog
I am seeing another doctor tomorrow.
This thing is driving me up the wall.
Good move saisay!:2tsup: I hope there is something more positive from this opinion.
Apart from your physical well being, they (the medicos) often give little consideration to your mental well-being.

[chambezio]

I am sorry to hear of your plight SAISAY.
We are taught to regard doctors very highly because they are oh so much more clever than us.
My wife and I have had some other than favourable dealings with them so I can sympathize with you. But you are not after sympathy you are after answer and aright one at that. we have had the run a round.
My mother-in-law is 80, has a bad heart that gets her to hospital now and then. She went to see her heart specialist for a check up and he told her to come back for another checkup in 3 months. She asked the receptionist for an appointment for 3 months. No can't have one then booked out! So she asked for the next available one and the stupid receptionist tells her that they will be opening the appointment book for that month on such and such a day(weeks away). Can't make an appointment because you have to ring on the appropriate day to get in on that month. Long story short the see you in 3months ended up 6 months later. What a load of crap!!!

I do hope you can have a comfortable time over Christmas and that you can get someone to sort you out and get you on the road to complete recovery

[KBs PensNmore]

Hi Saisay, I sympathies with you on the pins and needles in the legs, I have a similar problem, I had faciotomies on my legs, and the nerves were severed, twelve years ago. I know how you feel, not getting a decent answer. :((
The doctors keep practicing, ONE DAY, they might get it right, ONE DAY!!!!!!!!!!!!!!!
Kryn

[SAISAY]

Well, I went and saw the General Practitioner at the hospital, another fancy title for a medico.
The reply?
"I don't have a diagnosis so I can't do anything for you!!"
1 hour waiting time and 5 minutes seeing the doctor.
Great help (NOT) and waste of my time.
Apparently I suffer from an unspecified medical condition and just have to keep on with the medication that works, even though they don't know why and when it stops working, try something else.

[wheelinround]

Makes you wonder how they past exams right through school doesn't it.

[Drillit]

Hello Saisay,
I am not a MD, but I had similar symptons, with resulted in a diagnosis of poly myalgia rheumatica and giant cell arteritis.
The treatment for the giant cell arteritis was prednisone (& the PMR) . GCA affects the eyes and can cause blindness unless treated.
The (2) blood markers for inflammation of this nature are CRP (C-reactive protein) and ESR (E sedimentation rate). I just mention all this to
you in case it can be helpful and that you might wish to take these aspects up with the medicos. Take care, John M.

[SAISAY]

Hello Saisay,
I am not a MD, but I had similar symptons, with resulted in a diagnosis of poly myalgia rheumatica and giant cell arteritis.
The treatment for the giant cell arteritis was prednisone (& the PMR) . GCA affects the eyes and can cause blindness unless treated.
The (2) blood markers for inflammation of this nature are CRP (C-reactive protein) and ESR (E sedimentation rate). I just mention all this to
you in case it can be helpful and that you might wish to take these aspects up with the medicos. Take care, John M.

I was diagnosed with PMR and Lupus 3 years ago.
Now they have changed their mind and tell me I PROBABLY do not have PMR and that the Lupus was PROBABLY shingles.
Whatever it was it was extremely painful.

[Mulgabill]

I was diagnosed with PMR and Lupus 3 years ago.
Now they have changed their mind and tell me I PROBABLY do not have PMR and that the Lupus was PROBABLY shingles.
Whatever it was it was extremely painful.
SAISAY, all I have to say about the medicos is :gaah: My sympathies to you, but don't let it get you too down.

[shedbound]

I understand your dilemma, the only real help we can get for our children is in the USA. Politics and ego's, seem to get in the way of some doctors being able to help.

[SAISAY]

You wouldn't believe what happened.
I got so tired of stomping around like Herman Monster and having legs like fence poles.
I had some old fluid tablets and in desperation I took one every morning for a week.
I lost 5 kilo in that week and I actually have ankles again and can feel the bones in my feet.
The continual pins and needles have diminished greatly as well, I can actually feel my hands again.
The doc was horrified when I told her, as they interfere with my kidney problem but she relented and gave me some that are not quite as bad for my kidneys.
Every doctor I saw commented about the puffiness but no-one suggested fluid tablets nor any solution to the problem at all.
Makes you wonder what they teach them in doctor school :rolleyes:

[Sturdee]

Every doctor I saw commented about the puffiness but no-one suggested fluid tablets nor any solution to the problem at all.
Makes you wonder what they teach them in doctor school :rolleyes:

Even though our illnesses are totally different, I've got autoimmune hepatitis, I'm also on prednisone. One of the possible side effects of this medicine is "water retention leading to swollen legs and feet" so it's surprising that your doctors didn't comment about it.

My doctors fully explained this medicine and again the hospital chemist explained it as well and even gave a Consumer medicine information sheet about this medicine. This info sheet also warns against taking diuretics as these medicines may be effected by it or may effect the prednisone.

BTW these info sheets are available on line and it may be worth your while to look at them. I started of with 40 mg a day but am now down to 7.5 mg a day as the dosage of my other tablets increase. What dosage are you on.


Peter.

[SAISAY]

I am on 20mg Prednisone daily and now on 25mg Dithiazide daily, to be taken when needed, which, in my case, is every day.
These tablets are supposed to have a lower level of sulpha, which I get a reaction to.
I am to have a kidney function test in 3 weeks to determine whether these tablets interfere with the kidneys.

[Lazy Harry]

Geez SAISAY (http://www.woodworkforums.com/members/5095-saisay), you have my sincerest sympathy. I felt like saying it could be Diabetes, I also have numb feet and pins and needles in them and my hands, supposedly it's the Diabetes which is causing it. I wonder if it's a circulation thing or a nerve damage thing. I'd opt for the nerve angle. You've fallen and damaged your spinal cord and basically any damage anywhere on the spinal cord can play havoc with feelings in your legs. It's not nice when something so major leaves your doctor guessing, I went down that road with what one doctor called Crohnes Disease another called Colitis and yet another agreed with me, it was Agent Orange poisoning. But I guess that's why they call it a medical practice and we're the bloody guinea pigs.

Great news about the diuretics, who would have guessed that cure. You must feel a lot better after recovering feeling in both feet and hands. How easy it would have been for you not to have tied the two together. It certainly seems strange though, was the extra fluid putting pressure on your spinal cord somewhere? There's no doubt about it, the human body is a marvellous piece of work. When I think what I used to put mine through in my younger days, it's amazing that I'm still here today. Oh to be 21 and bullet proof once more.

Good health to you mate, look after yourself, all the best Stu

[Chris Parks]

Prednizone causes cataracts so medicos prescribe as a last resort. I had both of my eyes done because of it but every cloud has a silver lining, I am most probably the only 69 year old in Oz that does not need to wear glasses ever again for reading or long sight.

[rwbuild]

Makes 2 of us, had my cataracts done 5 and 2 years ago, one eye for reading, the other for distance, after 20 odd yrs with glasses, dont need them now.
Got mine done only because of cataracts, no other reason.

[Chris Parks]

Makes 2 of us, had my cataracts done 5 and 2 years ago, one eye for reading, the other for distance, after 20 odd yrs with glasses, dont need them now.
Got mine done only because of cataracts, no other reason.

Mono vision is awesome if your brain can tolerate but not many can.

[mummatoni]

So many things causes pins and needles. Nerve pain is the pits isn't it. Nerve pain has ended me today on full disability awaiting an electric wheelchair. So know very well on how drs can drive you up the wall. I have this specialist favourite saying iw just keep on trucking. Well it alright for the pain specialist to spurt that off as he goes home and lives a happy pain free life.
I am so sorry to hear your in this same battle too. Sorry better reintroduce myself i used to be here donkey years ago by the name lubbing5cherubs. Hopefully by now you have an answer for your symptoms even if just for your own brain sake to know your not nuts. I know i found just to get a name not that they can do much to help but made it easier to explain for others. So that when tell people and hear oh yes i have that too. Some people although know trying to be supportive and helpful it far from it. Hang in there matey hope soon they find the right meds to get you back some form of life again

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