Had Enough
 

Ok, I'm officially DONE with Neurologists. I must note yet again I didn't get to see the Consultant I was supposed to see.

What did I "learn" today?
I am in a massive amount of pain.
I have painful parasthesia, left side, with little feeling except for the pain in my legs.
I have no strength upper body or arms.
The left side of my head/face is painfully numb.
I have double vision.

What was really "new" information?
My double vision is far worse than first measured.
My brain is splattered with many more "white matter lesions" than '07.
Arachnoid Cyst has doubled in length.

Hour-long appointment Conclusion:
Nothing can be done about double vision - knew that.
Symptomatic Arachnoid Cysts don't exist in this Country.
Neurotoxicity of solvents is not taught in Med School.

What was ignored - typed list, bearing in mind I was in for an HOUR:
Question as to cause of lesions.
Q. What is compressing spinal cord in my neck.
Q. Everything about Arachnoid Cyst being symptomatic, mental and physical.
Q. Referred stabbing pain in upper arms and left leg, below knee.
Q. New needle sharp, bright white pains in feet, legs, some torso and hands.

From now on I will stick with my wonderful GP and PM Team.

Dave.

I'm sorry Dave.
I was hoping your long anticipated appointment would have a more productive and positive outcome.

I am truly sorry....the frustration level isn't going to help you pain neither. Sorry for that too...at least, yes I'm going there :rolleyes: you have 'wonderful' doctors to fall back on.....

Thanks Enna70,
I'll try to get a phone consult with my GP this week when my Anxiety levels, and the pains from being bashed, scraped and stabbed eases.
These White Matter Lesions in my brain MRI - very noticable thumbnail size, and lots - have me worried. All I can find is about elderly brains and Dementia, I'm 53
:deadhorse:

Dave

NHS strikes again ... and misses
 

Oh S...! was my first reaction to your post - Dave - so sorry - I'd been wondering for past few days how your appt. would go - you were so prepared with your research and still the NHS let you down yet again. I know you probably don't have the energy to go through it but does the UK health system have a tribunal or review commission you can complain to about the negligent treatment you've received? Not something you probably want to consider right now so I won't go on. As an aside are you a cricket fan?

Hey Dave,
Don't mean to sound like a prick, but I'm pleased, at least I'm not the only one having 'fun' with dr's. I'm 10yrs younger than you and I'm being told dementia too. At least you aren't being told its a psychological thing yet. When they can't/don't find an answer they often label it all as psychosomatic. If they can't find the answer in a book then it isn't real, so the easiest answer is that it's all the patient. "it's all in your head" I was told, as if I didn't know that already :mad:
Merl1n

Dave, I am really sorry to read that the meeting was so unhelpful especially because (I would expect nothing less from you), you spent a lot of time writing down the concerns that you wanted to raise with the consultant.

I hope that your GP and PM team can offer you all that you deserve.

With care and support.

So sorry.... Dave. Doctors really can infuriate patients. On PN the neurologist complaints are many. This is no comfort, I know, at this time for you, though.

Neurologists really are not into healing care. They identify, basically and perhaps use some therapeutic models, but really very few treatments exist for our complex brains. They also seem to have poor bedside manner too. They are often also arrogant.

There is one retired neurosurgeon in the US who is on the net with his own website. During his years of seeing patients he developed nutritional supports based on research, to aid his patients recovering from neurosurgery and/or trauma.

Dr. Blaylock MD

https://w3.blaylockwellness.com/LP/H...FW0V7AodrGUADw

Another MD who seems to favor healing the brain is Dr. Perlmutter.
http://www.perlmutterfoundation.org/...s-disease/cc07

Both of these doctors are investigating healing for the brain.
So I strongly suggest you study them when you can.

I know Dr. Blaylock has youtubes...so there you can listen if reading is too fatiguing. I don't know if Dr. Perlmutter has any...I've not looked yet.

Hi Dave,
MrsD sure has it right when she says neurologists really are not into healing care.
I've seen many and it generally was not productive either.

What a disappointment to prepare and wait all that time and not see the doc you expected to see. What excuse did they give you?

How your arachnoid cyst could have doubled in size and they don't think it causes symptoms is nuts.

Many some websites to peruse to show docs they are symptomatic.....

http://www.theacpa.org/condition/neuropathic-pain

http://www.columbianeurosurgery.org/...achnoid-cysts/

http://weillcornellbrainandspine.org...arachnoid-cyst

This was just an interesting procedure offered from the above center....
"Endoscopic cyst fenestration is an advanced technique that has the benefits of fenestration without the risks of open surgery, combined with the simplicity of shunting without the risk of shunt complications. It’s a short, safe procedure in which the neurosurgeon uses an endoscope (a type of tube with a camera), to drain the cyst internally. The procedure takes only 30 minutes to an hour to perform, and patients can return home the following day."

Hang in there...you know life is a series of ups and downs....you are due for an upswing!
My best, D.

My friends and fellow members,
You know me by now, know that I try to stay positive in my Postings and my support. Yesterday was rough, both physically and mentally and this Post reflected that.
Yet, well within 24 hours, your support has turned me around.

Lara: Comforting words as usual.

Bluesfan: A complaint or Tribunal would be inappropriate. The Neuro was thorough enough examining me and going over old stuff, and he showed me my MRI with the Occipital and White Matter Lesions. He just had huge holes in his knowledge which others on the Net have, and which one would expect. He also couldn't/wouldn't answer other questions due to NHS Opinions, I assume.
I could easily be referred to another Neuro by my GP or Eye Consultant, but it would be another 5 hour day of "what's the point?"
As for cricket, I can't watch it but support and follow the results of Lancashire, and support the England and Wales Cricket Team. I support England, and English competitors, in every sport - individual and team.

Merl1n: This was my first Neuro for years - I don't know why I was persuaded to go back.
Damage to my spine from accidents and the damage in my brain on the MRI are clear to see, I'm afraid.
You need to hang in there and keep pursuing the correct dx from the right Drs. Eventually you will find the answers.

Kiwi33: Short, and sweet, thanks as usual.

MrsD: I've noticed the Neuro complaints all over the Forums - from all over the World.
I never met ONE who gave me a med FOR my conditions - always using unpredictable side-effects to treat me. This is even the case with my Topiramate for Cluster Headaches.
I will check out Drs Blaylock and Perlmutter asap.
Your thoughts are insightful as usual.

Diandra: As is usual with the NHS, no excuse was forthcoming. I don't even know if he was in the Clinic.
I read the Columbia site last night, it amazes me the differences of opinion there to here over these Cysts. Don't get me wrong, I'm not obsessed with it - nor do I want anything done, brain surgery, NO THANKS! I simply want it recognised that the Cyst COULD be responsible for some of my neurological and mental issues.
I will read the other sites as my eyes allow, with MrsD's links. Thank you.

You all turned my mood around about this. Before I joined this Forum my Depressive Disorder would have had me down and obsessing for months. I'm still down because of my Disorder, but not over the Neuro as I know so many go through the same thing and you all have switched that obsessive mood off.
Thank you

Dave.