Topic: Good News and Bad News after My Neuro'Appt.
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hello <<<<< LymeNet family >>>>>,
This is follow up to the MRI that I had from Dec.28th,2015:
Even tho' they could not do the contrast part of the MRI. because of the Myoclonus issue I had during the test, The Doc'[NON LL ,most likely he sides w/ IDSA] could see no evidence of stroke, or tumor.
During office visit, he noted I am having some balance issues,said there were some age related things noted on the MRI, but nothing that should cause the Myclonic issues.
He is as puzzled as we would be, if we didn't know about the Lyme and Co's. He is concerned about possible muscle problems and Autoimmune issues.
So I'll become the pincushion again in a couple of days for more blood work. He's doing a 'Neuro'blood work up'. ANA thyroid, Sed' rate, rheumatoid etc.
He wanted to do a 24 hour EEG and Medicaid will not authorize it. So if they don't reject it, the next thing we'll try, depending on the blood test findings is the EMG on the various limbs [probably neck, shoulders arms at least].
The Dec. blood work ups didn't show anything abnormal[ other than my bladder infection], but we'll try again. Maybe the Neuro' blood work up will give them some clues?
It's got to be frustrating for the Doc', I know it is for us. I so wish more Doctors were properly educated in Lyme disease, what happens when it goes long term, and it's co-infections.
Well, I don't like needles,blood tests and injections[ my tiny veins tend to roll and collapse], but I'll pray the Neuro' blood work shows something of help to us, and that Medicaid will authorize the authorize the EMGs.
At least there was no sign of stroke,or tumor. I'm sure what Doc' called signs of aging,is some of the lesions we saw in my CT from 10 years ago.
Please join me in Praying,if you Pray, and feel free to howl and growl along too if you want!
I'm being a Pirate Wolf for the moment... AAaaaarrrr... Aahhrrrrrr... Aurrghhhh.... OWoooOOoooooo!
[ I have purty black, gray and silver, argyle socks... Ya Know Aaarrrrgyle, but they are too tight right now, sorry off topic for the post... but I do like them ].
Jus' that Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Jus' me again, not sure if this should be here or in Medical, so it can be shifted if need be!
I am finding it all discouraging, very pleased I'm not looking at a tumor, or stroke situation,but how can we get a proper evaluation when the Medicaid Insurance wont authorize.
As the doc said, just the simple Normal EEG in this case will not show what we need.
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
Praying for both you guys, I hope your testing gets approved.
So glad there were no signs of stroke or tumor! But yes, frustrating not to have answers. (((HUGS)))
Posts: 474 | From US | Registered: May 2014
| IP: Logged |
posted
Sorry to not have any real answers. Things like this are very hard to pin down.
I'll move this to medical for you in hopes of more ideas.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi there <<<<< gz, and Lymetoo >>>>>,
Thanks for the replies, and moving the post for me, Lymetoo.
It was a relief to know there were no signs of tumor or stroke.
Mom's sis' had an odd brain growth, it took years to Dx, went into aneurysm [you wouldn't believe was spell check comes up w/ for that word], She had a shunt put in, because of fluid build ups after the problem was repaired.
Sadly, it went into cancer eventually and she died. She was the youngest of moms siblings.One of my nieces, is facing some odd brain issues as well now.
I was hoping, and the Doc' was hoping, that the MRI might show more than it did. he doesn't feel a regular EEG will give us any answers. So wanted to do the 24 hour EEG,as follow up.
My mom had an odd form of epilepsy, and I don't know what it was called, so that didn't help much either from a Dx perspective. It was found during a SPECT or PET scan.
My sis' has some sort of epilepsy like condition, found in a sleep study, They could tell something was off, but couldn't follow the 'brain trail' if that makes sense.
The Neuro'Doc' is concerned that there may be a muscle problem w/ me, and the Myoclonus issue. Well, we'll see what the pincushion pokes...er blood testing reveals, he is having them do the blood test Neuro' evaluation.
And maybe an EMG, if Medicaid doesn't refuse us that as well. I've had two EMG's not fun, more pincushion effect. Supposedly the technology is a lot better now. I hope so,If the EMG is ordered.
It is discouraging tho' that an Equivocal Western blot,is not enough for them to treat for LD. We are still battling w/ them over release of the kDa band numbers from LabCorp.
I'm sure I'm repeating myself,and info' here...so ..argyle... away for a bit...and check in after awhile....Aarrhhrr ...and OwooOOOoowooo!!!
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic