Topic: before diagnosis anyone ever wonder if they had a brain tumor
Maya12
Frequent Contributor (1K+ posts)
Member # 36392
posted
Just wondering if anyone ever wondered this as the cognative and memory problems and confusion can be so bad?
Have other been bad enough to wonder this before lyme diagnosis?
Posts: 1632 | From Canada | Registered: Feb 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Absolutely. Positively.
And that is why a good LLMD will consider all the "differential diagnoses" during assessment and before diagnosis. If an MRI or other kind of brain scan seems appropriate, the LLMD will direct that.
Actually, in early stages, a brain tumor would not usually cause as much devastation to all the body systems as does the typical set of lyme symptoms.
I would have far rather had cancer or a brain tumor than several tick-borne infections. Far rather. I've known people who have had both and most of them manage far easier and recovered quicker than a lyme patient.
Of course, if every doctor were to be lyme literate and ILADS-educated, so many people would not have to go so long until diagnosis & treatment.
Rest assured that when you see the LLMD in June (or before), they can determine what other tests might be in order.
Rest assured that, step by step, this can be figured out. For now, focus on the things that help your body and spirit. Gotta enjoy something about each day, even if just appreciation of music, nature, laughs, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- I have found no other article that explains it so well. Not just about when to suspect but how to understand what all is going on:
I think it's a normal process to think that.
Posts: 98 | From Ontario | Registered: Feb 2012
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Maya12
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posted
Hey keebler what were your symptoms again?
Posts: 1632 | From Canada | Registered: Feb 2012
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Maya12
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posted
Can the symptoms of lyme mimic and be as bad cognatively , memory wise and causing confusion, as a brain tumor?
Posts: 1632 | From Canada | Registered: Feb 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes.
If it's hard to read the Bleiweiss article, see if someone you trust can read it with you - or for you.
Many questions you have are answered there. While it can be alarming to read, and it may strike a chord - it is so important to read this so that you have this knowledge base.
You asked me to describe my symptoms. I rarely do that - for a couple of reasons. Suffice it to say that at least 90% of the Bleiweiss article describes my symptoms and experiences.
Regardless of what is or is not going on right now, you will not have more details until you see the LLMD for a proper assessment.
In the meantime, all we can do is nourish & nurture - and remember that this can get better. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Maya12
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posted
Well I am sending my paperwork to the llmd tommorow
Posts: 1632 | From Canada | Registered: Feb 2012
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posted
I was surprised I didn't have one when I had my MRI. I used to think that no one could have all these symptoms and not have one!
Posts: 581 | From CT | Registered: May 2008
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Maybe your GP will do some "ruling out" tests. This might help ease your mind and get some of the "leg work" done before your LLMD appt.
Of course my GP did not do these tests to prove or dis- prove lyme, they were done to see if something was going on. You do not have to mention lyme to your GP, just ask for some further testing.
Posts: 98 | From Ontario | Registered: Feb 2012
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MichaelTampa
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Member # 24868
posted
Yes, me too.
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
My HPA axis was so messed up so that there was consideration for a pituitary tumor. Thank goodness I had an MD willing to order a brain MRI which did not show a pituitary tumor but did show the white matter brain lesions which eventually led to my Lyme dx.
Oh, and may I add that it was NOT an MD who considered Lyme after the brain lesions were found, but a friend who I told about the brain lesions who pointed me in the right direction to get tested for Lyme.
Posts: 478 | From Third Coast | Registered: Feb 2011
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Maya12
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posted
The thing is I don't have that much pain or joint swelling.
My fingers and toes do swell and can sometimes hurt a bit but generally I don't have much pain other than head pressure and neck soreness.my hands and legs and feet do go numb quite easily as well.
Can you still have all the neuro , cognative , memory and psychiatric type symptoms but not much pain and still have lyme?
Is there always pain with lymes or have some had only neuro symptoms without much body pain?
All my symptoms seem to be neurological but for the ones mentioned above as well as daily morning nausea and my left knee will hurt a bit off and on and swell a tiny bit
Posts: 1632 | From Canada | Registered: Feb 2012
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Maya12
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posted
Can anyone explain this?
Posts: 1632 | From Canada | Registered: Feb 2012
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posted
Quote from Keebler:"I would have far rather had cancer or a brain tumor than several tick-borne infections. Far rather. I've known people who have had both and most of them manage far easier and recovered quicker than a lyme patient". I am a brain tumor survivor and I can tell you first hand that the symptoms from the hemangioblastoma I had removed were easy compared to lyme and co's. One commonality is the gait and balance issues I had in both cases. It is very easy to assume you could have a tumor of the brain,have an MRI to be sure. Having brain surgery in 1994 I feel "brought out" the lyme symptoms. I quit my job which I worked so hard to get only to find out later I had the lyme complex and since treatment( 15 years post sugery)I am almost fully functional. Yeah, walking around for 15 or so years believing all my stuff was from brain surgery. It did not help that I suspected lyme(and was tested twice with a negative Elisa result) and then was told it is" just depression". That cost me a bunch of quality of life. Oh well, all is good now.Read about it in my up coming book"Luckiest Man On The Planet". Good luck Maya 12
Posts: 342 | From northern california | Registered: Dec 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Maya, I had no joint pain with lyme. You see the long list of symptoms in the Burrascano Guidelines, pages 9-10. Anyone can have any combo of symptoms.
My main symptoms were extreme muscles weakness, so I could only stand 1-2 minutes, could not hold the phone for more than 30 seconds, dreaded rising up from a chair, etc. Also, lyme gave me a false menopause.
Finally, I was totally exhausted all the time and could not sleep.
So, this is an example of having lyme and having no pain.
I am not going to list the mental symptoms and many other symptoms I had. I'll just say anxiety and memory problems plus many, many more tortures you don't want to know about. I had daily nausea for the last 3 months before treatment.
So, YES you can have lyme and have no pain in the joints.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I have both. Lyme and a brain tumor. Not sure which is worse.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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Maya12
Frequent Contributor (1K+ posts)
Member # 36392
posted
Hey tf and corinne thank you for your imput this disease is so mysterious with so many facets and corinne I am so sorry you have both I really hope it is benign. Have you had to have surgery to remove it?
Posts: 1632 | From Canada | Registered: Feb 2012
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posted
Corridor. That statement is incredibly powerful. From someone who obviously understands. It is very validating to a Lyme sufferer to hear that. I am sorr you have had to deal with both
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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