Re: Desperate for HELP!

Posted By Tina on June 11, 1999 at 09:41:37
Dear Dr.
Hi!  I am a 29 year old female with a husband and 2 small children.
I have been with severe headaches and shooting pains in my head on a daily basis for the past 6 months.  Actually, the shooting pains started about 3 weeks ago.  The pains and headaches get worse when I bend down.  They usually start about 10 minutes after waking up.  This past week the pain was so bad that my face even hurt.  It was even painful to the touch.
I have been to 2 neurologists and they have ordered MRI's (of the head, C-Spine and Lumbar), CT Scans, Sinur X-rays, blood work, eye exam (including a visual field), 2 Spinal Taps (I am assuming that a Lumbar Puncture is the same as the Spinal).  All have come back good.  Well, all but the protein level in my spinal fluid.  The first was 126.4 (that was done back in March) and the 2nd was done about 4 weeks ago which came back as 73 or 74.  The 2nd doctor ordered the MRI of the Lumbar, Lumbar Puncture and just this week ordered another MRI of the brain.
I am getting a tad bit nervous because he mentioned to my husband after the Lumbar puncture that he did not see anything in the MRI of the Lumbar area but the protein level did come down but is still elevated, that he actually thinks there is a tumor starting to form somewher.  We are thinking that it is in the brain because it did not show in the Lumbar area.
Do you think I should be this nervous?  Do you think that if there is a tumor forming that it would show up on the MRI's?
The headaches get so severe that I get very miserable hearing the kids scream and carry on.  I hate feeling this way.  I love my family so much and they too are tired of me feeling this way.  The headaches and pain also keep me from attending work.  I know that I get a lack of sleep because I work until 3 in the morning and have to get up for 7 to get my oldeset off to school.  This does not help the pain, I know.  My family and friend actually could tell when I have these ailments from just looking at my face.
When I talked to the doctor yesterday he said the results for the MRI are not in yet.  I even told him that I could feel when the meds (Neurontin 4 x's a day and Vicodin 2x's a day this one is only when needed) start to wear off.  Another thing I questioned him about was I am starting to forget a lot of things.  That alone is very scary.  He said it is anxiety from the headaches.  Could this actully be true?
I am so looking forward to hearing from you.  Maybe you could put my mind at ease a little bit.
Sincerely,
Tina Floray

[CCF Neuro[P] MD RPS]

Posted By CCF Neuro[P] MD, RPS on June 11, 1999 at 23:07:53
Dear Tina:
Sorry about your headache and fever.  Did the doctor do any lab work?  The are a couple of things that can cause fever, headache, and elevated protein in the CSF.  The most common thing is a collagen vascular disease.  Another is vasculitis (sort-of the same as collagen vascular disease but is related to the vessels only).  It really does not sound like a tumor.  The MRI was normal and the CSF did not show any atypical cells (I am assuming that this was performed).  The normal test that you describe rule out alot of things that would be worrisome.  I think I would look into the vasculitis, autoimmune disease angle with your neurologist.  The MRA part of the MRI should give your neurologist some clues. Push for some lab work like sedimentation rate, blood count, etc.  It is so difficult to try to give someone a diagnosis over the internet without being able to physically examine them.
Sincerely,
CCF Neuro[P] MD  

[Tina__0__0]

Posted By Tina on June 13, 1999 at 19:49:47
Dear Doctor,
Thank you for your response and I will most certainly ask my doctor about it tomorrow when I go for my next appointment.  He is having me set up an appointment with the Headache clinic near Philadelphia, PA.  Do you really think it will be a waist of time going there?  I am not sure what they  will come up with since he said that it is only a headache clinic.
My mind is a little at ease since I read your response, but yet I am still a little worried since I don't know what this vasculitis is.
Once again...Thank you!
Sincerely,
Tina

[CCF Neuro[P] MD RPS]

Posted By CCF Neuro[P] MD, RPS on June 15, 1999 at 11:22:44
Dear Tina:
The headache clinic at Thomas Jefferson is very well respected, and if you are going there, you will get a good work up.  
Vasculitis is inflammation (either induced by infection, autoimmune, systemic illness, etc) of the vessels.  
I hope that your doctor appointment goes well.
Sincerely,
CCF Neuro[P] MD

[Tina__0__0]

Posted By Tina on June 16, 1999 at 14:54:27
Dear Dr.,
Once again, thank you for responding.
I called my insurance company to see if the Headache Clinic will accept it, they said NO!  That was a great disapointment.
Since then I have gone to the doctor.  He said "I am quite concerned about this.  The protein is showing a tumor since it is 79 but the MRI does not show anything".  He told me that if the clinic does not accept me then he is going to do another spinal tap and do a test with wires and dye.  I cannot remember the name of it.  I believe it has something to do with the arteries.
He prescribed two different medications.  One is a nasal spray for headaches (Stadol NS) and the other is Diamox.  The Diamox I started taking yesterday morning.  The nasal spray I took around 7:00 at work lastnight.  I actually had sweat pouring down my head when I was at the oven.  After lunch around 10:30 I felt terrible!  My Line Lead had to bring me home early from work because I could barely walk or even stand.  Quite embarassing.  As of today I am starting Short Term Disability.  I am not proud of this.  I am actually angry.  These headaches have been with me since February and still we do not know what is going on.  For about 2 hours now, both my hands feel like they are sleeping, like the needle pricks you get when your arm or leg falls asleep.  I did not take that medicine since lastnight.  I am afraid of a reoccurance of lastnight.  Should I take it when my husband comes home from work?  I tried calling the doctor but he is out of the office until noon tomorrow.
I did mention to the doctor about the Vasculitis.  He laughed at me and said the MRI does not show it.  He is sending me for more blood work.
If it's not a tumor or vasculitis, could this be MS or some form of it?  I believe he is checking or did check for a pseudo tumor.
Again,  thank you for your input!
Sincerely,
Tina Floray

[CCF Neuro[P] MD RPS]

Posted By CCF Neuro[P] MD ,RPS on June 17, 1999 at 15:35:31
Dear Tina:
The MRI will not show a vasculitis, the MRA will show a vasculitis, but the angio is still the gold standard.  So, I am not sure why your neurologist is laughing since an angio was not done nor did you indicate that an MRA was performed.  But, he/she has seen the lab work and the MRI and I haven't so he may be correct.  Second, in our headache clinic at CCF, we do not use stadol due to its addicting side effect.  I think you need a second opinion.  A fever with an increased CSF protein level is usually not normal.  Severe migraine can give an elevated CSF protein but not fever.  The normal MRI would indicate that if there is a tumor it is extremely small or not in the CNS.  Since you had a complete CSF analysis I am assuming that there were not atypical lymphocytes and thus tumor in the CNS would be unlikely.  
Again, I think that a second opinion from someone who will sit down and rationally go over the previous work up and make a plan for diagnosis might be best.  Or, you might want to consider paying out of pocket to go to the Headache Clinic at Jefferson.
Sincerely,
CCF Neuro[P] MD  

[Mike__0__0]

Posted By Mike on June 18, 1999 at 10:39:07
Tina do not always trust MRIs i had two of my neck and brain with no
conclusion. I had severe head aches and tightness in upper cervical region.
It got so bad I had endoscpoic surgery and that revealed C2, C1, gaglion
and post ganglionic nerves compressed by egorged veins and enlarged joint
capsule. EMG showed all normal also. The point being made that diagnostics
test do not always reveal the problem. ps i am not a doctor.

[CCF Neuro[P] MD RPS]

Posted By CCF Neuro[P] MD, RPS on June 21, 1999 at 09:02:04
Dear Mike:
Thanks for your comment.
CCF Neuro MD










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