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We answer all types of Neurology/Neurological questions about the brain, spinal cord, and peripheral nerves. Include your age, sex, current meds, and known diagnoses, upcoming/completed appointments, tests, or procedures. We are not physicians. We help explain medical terminology and give support.
Worried - Weird PT Appt & Brain Tumor Symptoms
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regslady posted:
Hi, everyone.

I'm a bit freaked out. For the second time in six weeks, I've had a medical professional quiz me about my cancer history and identify neurological symptoms I didn't realize I had.

The first time was when I went into the ER with a neck that wouldn't unlock. I thought I would get sent to the urgent care, but they kept me in the ER. The doc there noticed I had significantly decreased strength in my left arm and hand and quizzed me for a long time about my cancer history (colon cancer over 20 years ago). She did a neck xray for the symtom I came in for and found my AS (arthritis) had spread to my neck. She strongly pushed me to see my doctor right away for the weakness and thought I needed to see a neurologist.

My doc was equally concerned and did the referral for a nerve conduction test. When the neurologist learned I had AS, he figured it was likely that. He ordered x-rays (AS progression confirmed) and sent me to physical therapy at the hospital.

I had that appointment today and I'm glad I waited to get in at the hospital rather than going somewhere else. The evaluation took over two hours and wasn't completed. He stopped it so he could talk to my neurologist...and was attempting to call him before I even left the building.

Symptoms that seemed to concern him:
  • frequent headaches, worse with activity
  • memory loss
  • blurred vision
  • left-side weakness
  • dizziness followed quickly by passing out about once a week
  • lack of coordination (I totally failed the finger to the nose test)
  • increased accidents
  • posture/stance weighing heavily on the right side
  • something about my eyes when I followed a pen he had in his hand
  • a few other things I can't remember right now
I'm assuming I'll be having some follow-up tests, and the ER doctor had specifically mentioned that I had a host of symptoms that occur with brain tumors, so I think that might be something they investigate.

I'd normally ask my mom about a medical issue, since she's a retired nurse, but I feel like I should wait on this unless they positively identify something that needs addressed.

Right now, I'm just wondering what I should expect from here in terms of tests and what they may look for.

Thank you so much!

Nancy
Reply
 
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susiemargaret responded:
hello, nancy --

how scary! i don't blame you for being unnerved!

i am not a medical person, altho i answer many of the posts here if i can do sufficient research. but with your situation, i'm afraid i don't even know where to start, and so i apologize for not being able to respond to your Qs.

i'm hoping that REDBEAR, who occasionally checks in on this community, will see your inquiry and have some ideas. he is not a dr, either, but is extremely knowledgeable about all things neurological.

i send you caring thoughts and wish i could be of more help. please keep us posted on how you are doing.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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regslady replied to susiemargaret's response:
Thank you so much...I appreciate your reply.

My neurologist told me point blank that he very rarely does phone calls, so I assumed it would take a while to hear anything. I may call tomorrow and see if his nurse can tell me something. I'm one of those people who worries more when I don't know what is going on than when I do.

I'll post when I hear something concrete.

- Nancy
 
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susiemargaret replied to regslady's response:
hello again, nancy --

good plan with the nurse! they usually know what the dr knows and have more time to talk, besides.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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RedBear2005 responded:
The list of symptoms you've posted has similarities to more than one neurological problem. The ones I'd particularly expect your doctor to look into would be stroke, embolism, benign or malignant tumor, arterio-veinous malformation, and elevated central nervous system pressure due to scoliosis (curvature or compression) in the cervical spine. There are also some similarities to symptoms seen in MS and other demyelinating disorders.

High on the list of tests that are likely to be run will be a full skull series MRI at 1 millimeter resolution, conducted both with and without contrast agent, and with post-procedure 3-D reconstruction and analysis. Such a procedure is expensive (~$3 to $4,000 plus) and not all MRI centers are equipped to perform it. But it represents the gold standard for brain imaging to either find or eliminate tumors and embolisms as potential sources of the symptoms you've been seeing.

For your own protection, be aware that I am not a licensed medical practitioner. I have supported chronic face pain patients as an informed medical layman and patient advocate, for about 15 years. I am reasonably well read in the literature of cranial neuroscience, but my input should not be regarded as authoritative. If your neuro won't talk to you about findings so far, then talk with your family doctor and bring a copy of the neuro's records with you when you do.

Go in Peace and Power,
Red Lawhern, Ph.D.
 
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regslady replied to RedBear2005's response:
Thank you both so much for your replies.

The nurse idea didn't quite go as planned. She saw that there was a message from PT that the doctor hadn't reviewed. She was going to pull it up and read it to me. Once she read it, she decided not to read it to me. Doc is scheduled to be in on Monday and I was told to expect a call.

Red - thank you for giving me an idea of possible issues the doctor may explore and the procedures he may employ. It gives me some peace having a clearer picture of what I may be facing.

Prayers of thanks for both of you for taking your time to be here for others. Your input helped restore calm for me when I was very scared.

- Nancy
 
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RedBear2005 replied to regslady's response:
Hi, Nancy,

Thanks for getting back. I've placed this thread on my watch list, but still, I'm not at WebMD every day and my visits of late have been getting far apart. I'm not satisfied with the subject matter categories here and the lack of any real focus area for most of neurological disorders, other than Parkinsons and this patient support forum.

If you'd like to "talk", you're welcome to send me mail at lawhern@hotmail.com. I check in there almost every day. My personal website is http://www.lawhern.org. As you'll see if you visit, my interests are legion. But high among them is a 15 year record of Internet community service as a patient advocate and online research generalist for chronic neurological face pain patients. I'm active in several other forums that are focused in that area. So it's very easy to do a google profile on me and see what I'm all about.

Please keep us (or me separately) informed of what you learn Monday. The list of things that could be involved in your symptoms isn't trivial, and in all candor, I don't think your neurologist and his staff are NEARLY sensitive enough to the negative health impacts created by patient anxiety. If I can help you settle and focus, I'm certainly willing to try -- within the obvious and appropriate limits I've voiced previously.

Go in Peace and Power,
Red
 
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regslady replied to RedBear2005's response:
Just a quick note...I've got an appointment with GP tomorrow...neurologist wanted him to do the followup.

Thanks again for your support!!!
 
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susiemargaret replied to regslady's response:
hello, nancy --

when you have a chance, please give us an update.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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regslady replied to susiemargaret's response:
I carefully wrote down all my symptoms, including examples of some of them for clarity. I take it to the doctor, who just gives it a cursory skim. His immediate response is that the symptoms could all be explained away by stress. The headaches were tension headaches.

He did an about-face on the stres diagnosis when he realized just how weak I am on my left side. Exam abruptly ended, referral sent while I'm still on the exam table.

He wants me to see a neurologist, but not the one that he originally sent me to. I thought a neurologist was a neurologist, but he said this one is a specialist. I got a call this morning and I'm scheduled to see the neurologist in late November.

I'm glad I have the referral. The month long wait concerns me a bit.
 
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susiemargaret replied to regslady's response:
hello, nancy --

well -- most interesting!

i'm glad you have a referral too. one thing you might do is call the neurologist's office and ask to be put on the "cancellation list." this means that if someone cancels their appt before yours comes around, the office will call you to fill that slot. practically all dr's offices do this, but they don't usually think about it unless you ask specifically.

i send you caring thoughts and hope that nothing gets worse before your appt. if you get to feeling like you have had some terrible deterioration or that some part of this is unmanageable, go to the ER.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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RedBear2005 replied to regslady's response:
Hi, Nancy...

Susie has given you good advice about the ER. If you feel yourself becoming weaker on one side or otherwise struggling, then go to either an ER or an Urgent Care Facility.

Regrettably, it is very common in the US to have to wait up to two months for an initial appointment with a neurologist. And as you are discovering, practitioners in that field are sometimes very narrowly specialized. Some neurologists do almost nothing but Parkinson's or MS patients. Others focus on migraine treatment. And believe it or not, I once heard of an orthopedic surgeon who did nothing but elbow surgeries! I kid you not...

Stay connected as you wait, Hon. It's always okay to come back to this forum and just "vent", even if you aren't looking for specific answers. And if you need advice in a 24-hour hurry, I can be reached most day through lawhern@hotmail.com

Go in Peace and Power
-- Red Lawhern, Ph.D.
Master Information Miner
 
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regslady replied to RedBear2005's response:
Thank you both for the advice and support.

I'll ask to be put on the cancellation list, Susie Margaret! I'm sure I will take you up on the email offer, Red.

I think I definately need the "vent" option right now.

The weak on one side this is driving me nuts as it is. I can't comb my hair, hold a pan or open a ziplock bag. The idea of it getting worse is terrifying. On the plus side, they are letting me proceed with physical therapy next week. Hopefully that will help.

You two are great...thank you so much.
 
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RedBear2005 replied to regslady's response:
A good physical therapist should also be able to advise you concerning the degree of your physical weakness between the two sides, and whether he or she sees progression in the weakness during repeated sessions. That's useful input to the neurologist, so be sure to ask that the PT does the observation and records it in case records.
 
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regslady replied to RedBear2005's response:
I need to vent.

This was a tough week. I was at the grocery store on Monday at one of the self-checkout lanes. A clerk came up to me and it was like she was speaking gibberish. Finally, it just clicked back and I could understand her. It was so frightening.

On Tuesday, I had my first appointment back with physical therapy. I found out he has a doctorate in physical therapy, which probably explains why he seems so knowledgeable. Unfortunately, I won't be seeing him again any time soon. He had me doing this strech thing with a band that had two handles on it. Easy stuff. He started talking to me and at first I was fine. Then, I started losing my words...where I'd have to pause a while between words because my brain was just blanking out and I couldn't get the words to come into my brain. Shortly after that started, I got this feeling like I was swimming and things started to go dark. I was able to control it and didn't pass out. The physical therapist said he thought the weakness in my arm was the least of my problems. He was calling my doctor to talk to him personally and wouldn't see me again until I'd been checked out by a neurologist.

I've been getting confused more lately and passing out more. It always seems to correlate with physical activity. Nothing intense, just walking or doing dishes. What would cause that?!

At this point, I'm starting to get scared and I don't have a very good support system right now. I wish I understood what was going on with my body. :(


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