Neurologist and the bungled lumbar puncture

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cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 7/26/2006 7:28 PM (GMT -6)   
Hi again, only a bit of news at present. Went back to Neuro yesterday to discuss the MRI and the bungled lumbar puncture. He tells me that I will need another one BUT this time they will heavily sedate me. As I used to say to my Dentist (who's name was actually Dr Scott) whenever I needed happy gas "Beam me up Scotty!" Star Trek fans might get a laugh from that! I could cope with anything if I had gas, I just used to float of into outer space.
Not bad going on the jokes today, thankfully I still remember them!
The Doctor who attempted the lumbar puncture rang my neuro and as it turns out I was her first patient as she only started that day! Our public hospital system here is a disgrace really. Anyhow after lots of apologies we got down to business. He is 99% sure that I have MS but as you guys would know can not predict the outcome of the disease. It is taking me a while to come to terms with what this all means and what I am going to do with the rest of my life. He did say that sometimes the condition improves over time or can virtually disappear then can come back or visa versa etc etc. Where does this leave you as far as getting work is concerned. I am also really worried that I will not be able to drive my car. Heaven forbid that is like cutting my legs off!
Anyway I am trying to stay positive. I find the fatigue and forgetfulness as well as my facial pain the 3 worst symptoms to deal with on a daily basis. At least now I know why I feel like crap most of the time! I made a follow up appointment with him and this should make you laugh, earliest appointment is 14th of February 2007!! Yep Valentines Day! I wonder will he give me flowers or chocs? lol Gee, I have a lot of little white spots everywhere on the MRI (described to me as white fluffy things by the Neuro) The radiologist was very interested in the haematoma in my right frontal lobe and went into great detail in his report however the Neuro isn't concerned, said if it was going to bleed it would have done so already! I sure hope he is right!
Anyway hope everyone is going ok, it is probably the middle of the night in the USA here it is 11.23am 27th July. I had better get off my bum and get some housework done. Catch you all later, take care...........
cocoa11

shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 7/26/2006 9:25 PM (GMT -6)   
Hi Cocoa,
I'm glad you now know what the whole truth was with your LP!  What an awful thing!  Be sure to call your neuro if you have any new or worstening symptoms.  Can you call on a regular basis and see if they have any cancellations?  Could the doc at least give you provigil to help combat the fatigue?  He should have at least offered some meds to help with your symptoms until he's definate about your diagnosis.
 
Take care!  Keep us posted!
Michelle ><>
 A true friend is like support to a leaning wall.


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 7/27/2006 4:27 AM (GMT -6)   
I'm so sorry that it's pretty certain that you do have MS.
 
Indeed, it is a highly variable, inconsistent disease.  There really is no way to know from day to day, or person to person, how you might respond, or how the disease may progress in your situation.
 
As for work: lots of folks with MS work, some at full-time jobs, some part-time.  I don't know what your employment laws are in your country, but here in the US, we don't have to declare that we have MS (or any other disabling or potentially disabling condition) unless and until we want to then request some accommodation on the job.  So some folks work, taking care to "ration out" sick days so that they do have plenty should they have a flare, or exacerbation; and otherwise work around the daily sort of symptoms that occur.  Are you working, now?  If so -- you might want to look around and see if there are ways you can work more efficiently so that you can avoid getting too over-fatigued (I see fatigue is already a challenge for you.) 
 
As for driving: While I use a wheelchair, I still drive a regular car, without hand controls. It does have automatic transmission, power brakes (and air conditioning, power windows, etc). but other wise is just an ordinary car.  I've had MS for over 23 years, and only have stopped driving for short periods of time, while in the midst of a flare, for example.  I hope that will be your experience too. 
 
Michelle had some excellent suggestions about keeping in touch with your doctor.  While the appointment is an eternity away!, I do hope you're able to call and keep him informed as to any significant changes in your situation.  If things do change dramatically, often they'll fit you in much earlier than the "regularly scheduled appointment".
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 8/2/2006 6:50 PM (GMT -6)   
Hi all, I've been off the computer a fair bit this week, feeling very tired and drained. Went to my GP a couple of days ago and she phoned the Neuro while I was there. She was horrified that I could not see him again until next year. Anyhow he will write to me and to her with any recommendations for medication etc. My Doc is about to head off overseas on the 10th of August so I will see her before she goes. (away for 5 weeks the lucky thing!)The Neuro will try and squeeze me in so that we can talk about what to do with my condition.
Re employment, we have to declare any disabilities that we have, otherwise if something happens while at work like a seizure or accident of some sort we have in this country workers compensation. If you have a pre existing condition and you don't tell them and something happens you are unable to claim compo. If you don't tell them and they find out you will most probably be asked to leave. All to do with the laws here, workplace health and safety etc.
As I am unemployed and on welfare payments I haven't started looking for work yet. Where I live is a little remote from the main stream so I will probably have to travel quite some distance to work. That is ok except there is no public transport. My car is a bit unreliable as it is getting old and I don't have enough money to buy a new one. Anyway I can't worry too much yet until I have that dreaded lumbar puncture. They haven't re-scheduled it yet and that is making me anxious, I hate waiting, would rather get it over with.
Thanks for the info about driving, that is comforting to know that I may still be able to drive. I am not sure whether this condition must be noted on your driving licence or not, guess I will find out soon enough.
The Neuro didn't offer anything for fatigue so I will ask my GP next week.
How is everyone else going ? I am sick of talking about me!!! I hope everyone is ok.
Thanks everyone for your concern and care

cocoa
hugs
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