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cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 7/19/2006 3:07 PM (GMT -7)   
Hi everyone I am from the land down under Australia (Gold Coast). I am 48 divorced and jobless due to illness and feel about 100 today.
Finally I have found a good forum with heaps of info and others who are rowing the same boat! I really just need to vent and to talk to someone who knows what it is like as I am all alone, no family and nobody that understands what this is like. Everyone thinks I am just plain lazy.
I have been unwell for a number of years and ended up in the Neurology Department recently due to chronic unexplained facial pain. The Neurologist ordered an MRI which showed numerous lesions in my brain and wanted to follow up with more blood tests and a Lumbar Puncture (Spinal Tap). He did not tell me what he thought might be wrong so I did as much research on the net before I went as I also have degenerative disc disease and a very painful back and I was concerned how the LP would impact on my back pain.
I rang the clinic and begged them to sedate me as I know I don't cope with this type of thing too well. (Walked out of an operating theatre once because the anaesthetist wanted to give me an epidural. I completely fell to bits!)

Turned up on time for the Lumbar Puncture to be told there were no beds so I would have to wait. That was at 1pm. At 2.30 I was sent down to the day surgery department and told to change. I sat and sat and sat. At about 4.30pm some unknown Doctor introduced herself and said she would be doing the procedure. Apparently they had forgotten I was there and she knew nothing about me what so ever only a brief discussion with the Neurologist who I was led to believe was to do the procedure. (He must have had something more interesting to do)
She said "You know that the Neurologist wants this done to confirm that you have Multiple Sclerosis!!"
(Gee thanks for that bedside diagnosis!)
I asked about sedation and she said she couldn't arrange it and not to worry I would be fine, doesn't hurt much etc etc. A nurse in attendence said she could make a few calls and may be able to arrange it but I think the Doc wanted to go home, more important than me of course! The day clinic closes at 6pm so there would be nobody to monitor me and there still were no beds available, I was sitting in a chair.
"I'll talk you through it she said. You'll be fine, you won't feel any pain, only the local anaesthetic"
I guess you can imagine what happened next. Completely lost it in the O.R. cried like a baby. Well, I have never had pain like that in my life! I've had some fairly nasty ops over the years and had natural childbirth but this was sheer hell and the pain unexplainable. Gave me heaps of local which didn't work at all. The pain shot first down my right leg, then down my left leg then through my back to my stomach and I screamed and screamed and begged her to stop. I will never let anyone attempt that ever again without being out to it. I don't want to scare anyone and I know that probably most people don't have any trouble at all. I told her about my disc disease and took the MRI of that with me, she didn't even look at it.
Now two days later I have shooting pain down both legs blurry vision and a foul headache. I feel a bit dizzy and I am physically exhausted and have to keep lying down because I also feel like vomiting. I am too scared to go back there in case something else goes wrong. Has anyone had a similar experience and does the pain in your legs get better. Definitely sciatic nerve pain, as I have had this for a long time in my left leg due to disc disease and have just recently got it under control. Bang goes all those years of physio and pilates!
I just can't stop crying! I wouldn't wish this on my worst enemy! I haven't come to terms with the fact that I have MS let alone cope with the dramatic alteration this is going to have on the rest of my life. I am just so terrified and scared! sad

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 7/19/2006 3:18 PM (GMT -7)   

I'm so sorry your lumbar puncture experience was so awful. Indeed, many folks go through that with only minimal discomfort, but when things go awry, it can be dreadful.

The pain in your legs may be related to the doctor having irritated the sciatic nerve, which you've already surmised.  The headache, though, and nausea: if that continues, you really do need to call your doctor, explain what happened, and ask for treatment. There is a treatment called a "blood patch" -- in effect, they draw blood out of your arm and re-inject it in the area where the puncture was done, to stabilize the fluids.  Usually the headache goes away almost immediately.

Given that lesions did appear on the MRI, I suspect the doctor was right -- the neuro wanted confirmation that you have MS.  Of course you need to meet with him to be sure. Given the fact that you have back problems already, it'll be important to sort through what might be related to that, as opposed to possible MS.  You also want to be sure to tell him how unhappy you are with the way you were treated during the lumbar puncture! It won't help you much, but maybe will save someone else from that awful experience.
...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 7/19/2006 3:47 PM (GMT -7)   
Thanks for the reply. I will go to the hospital if the headache etc doesn't improve. I will definitely tell the neuro what I think about how I was treated. On my N first visit he rubbed me up the wrong way as he made a couple of snide remarks. I read somewhere else on the net about a patient who went to a Neuro and was told to stop drinking and that she had an alcohol problem. She did not have any problem with alcohol. I drink socially, happy hour I call it while I cook my meal at night I enjoy a glass or two of wine. I don't think this makes me an alcoholic but because my LFT came back abnormal the same accusation was made to me. When he was doing the Neurological Test I call "Walk the Plank" in other words heel to toe, he said now lets see how much alcohol you REALLY do drink. I felt very insulted. I completely flunked the test overbalanced every step. I understand that this is not necessarily the result of drinking too much alcohol but can be related to other conditions including middle ear disease amongst other neurological conditions
As you say probably won't make any difference to me but hopefully others reading this can take steps to protect themselves from unnecessary pain.
Again thanks for taking the time to write to me, it means a lot to have someone to talk to.
:-)

shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 7/19/2006 4:17 PM (GMT -7)   
Cocoa,
Welcome to HW.  Please don't suffer, do go to the hosp./clinic and have them do the blood patch if this headache doesn't get better pronto!  They should have told you that.  I hope you have much better experiences ahead.  Please keep us posted! :-)
Michelle ><>
 Smile, Smile, Smile!


got better things to do
Regular Member


Date Joined Jan 2006
Total Posts : 176
   Posted 7/19/2006 6:00 PM (GMT -7)   
Cocoa,
I had the blood patch after lying about 3 days straight with terrible pain.As soon as they did the blood patch it was gone minutes later.Do not suffer, there is help!!!!!

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 7/19/2006 7:26 PM (GMT -7)   
Hi Cocoa,

It's a pleasure to meet you. I'm so sorry you had such a horrible time with the lumbar puncture sad As the others have already said, ask for the blood patch if necessary, and I really hope you get to feeling better soon. Please let us know how you are doing, and if you have any questions or just need to vent please feel free. We have a great supportive group here.

Kimber
 
Allow Healing Well to continue to help others, clink link for details

jena1225
Regular Member


Date Joined Jul 2006
Total Posts : 35
   Posted 7/20/2006 6:22 AM (GMT -7)   
I hope you feel better soon! I, too, had a horrible experience with my LP. Never was offered the patch either, and was in bed for days and when I finally attempted to get up, I vomited everywhere - back in bed!
 
If it is MS, please find a support group, or at least go to your local MS Society and talk to someone, it can really help since you have very little support from your family.
 
Do you have your MRI films? If not, I would recommend getting all of them in your possession. THEN, show them to your family! Usually BIG BRIGHT SPOTS on the brain will say it all! (even tho they are not as big as they look! lol). Good luck and let us know your results of LP

cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 7/20/2006 5:40 PM (GMT -7)   
Hi again and thanks everyone for your support, it means a lot! I gave my GP a call and she recommended exactly what everyone here did so I feel much happier now I know what to do and what is happening and why.
I'm pleased to tell you that my headache has almost gone but my vision first thing is still a bit blurry. Still have leg pain but now it is only in my left leg which is the degenerative disc leg so it may be just the old problem irritated by the Doc with that horse needle!
Unfortunately for me my family have all passed away. My parents died over 10 years ago now and I don't have any brothers or sisters. Cousins, Uncles, Aunties all live in Victoria Australia which is like the other end of the earth. I had little contact with them when I was growing up as we lived in a different State and in latter years Mum and Dad moved to Queensland so we were never very close to them.
Where I live people tend to be very transient, in other words they stay a while then move elsewhere. I have some good friends but they have moved to another State so contact is a bit limited. I will look for a local support group but I will keep checking in here to say hi and to see how everyone else is and how they are coping. I now don't feel so alone, I think that was the worst feeling and I felt very afraid.
Have a good day everyone and thanks again, it is so nice to know that someone cares about you. :-)

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 7/21/2006 3:59 AM (GMT -7)   

Please do come back.  We'll be glad to offer some suggestions, and share our experiences.  I tend to be a bit blunt, but I'll not offer something if I'm not pretty sure it's accurate, so ignore the bluntness and just read the rest and you'll be fine  tongue

So, have the results of the lumbar puncture come back? Do you have a confirmation that you have MS?  Here in the US, primary doctors can treat you for all your ailments, including MS. I've not been to a neuro in over 12 years, now (I've had MS for at least 23). My primary doctor, a lovely woman, does everything for me including everything related to my having MS. She'll consult with specialists on my behalf, then we'll talk about (and generally implement) their recommendations. Saves me a lot of time (don't have to go to other doctors!), and she has the benefit of having a total picture of my health situation.  You might see if that will work there, if you really don't like your neuro. Sometimes specialists like to diagnose -- but not treat -- patients, so they tend to be arrogant and dismissive.

Keep us informed about what your doctor says, once the spinal tap results are available.


...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 7/21/2006 9:51 PM (GMT -7)   
I still haven't heard from the Neurologist re the Lumbar Puncture so am still in limbo. I think that I will need to have another after the problem with the first one.
I am a bit up and down emotionally so stay online for a time then tend to get a bit sleepy so log out and have a rest. Please know that I find this site just the best and am so stoked for the support in here from members that know about this condition. Saturday here today and 2.45pm my time. I find that this is around the time I feel really tired so will log off now. Hope everyone has a great weekend, talk to you soon......
Uppitycats, your posts are great and thanks so much for caring, I'll keep you and all interested up to date as soon as I know anything...........

cocoa11
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