New and need an opinion on my MRI results please

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carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 5/20/2008 6:39 PM (GMT -6)   
Hi guys,
 
I am actually a frequent on the Lyme disease forum.  It is common knowledge that unfortunatley us Lyme people end up with secondary issues like autoimmune diseases of various types.  My recent brain MRI for a benign tumor that I had radiation on last year has thrown a few new issues into the mix.  I have profuse co-ordination issues, dizziness, eyelid twitch, muscles spasms, muscle and joint pain and tremors and muscle and joint pain.  I just recently had a baby and did great during pregnancy.  After about 3 weeks I was thrown into the pitts and I am weaker than ever with tremors that just scare me half to death.  I suffer extreme fatigue and take provigil to help with this along with various antibiotics for the lyme disease. 
 
The last MRI mentions  a few scattered nonenhancing T2/FLAIR hyperintense foci, predominately in the subcortical frontal lobe white matter.  Some of these may represent pulsation artifact from calvarial cortical vessels.  These findings are non specific similar findings have been reported with migraines (which I do not have) follow up MRI reccomended in 3-6 months.
 
Does this sound possibly consistent with MS.  I have has several incidents where the symptoms flare up but I am never "normal" but I do get times where I am less symptomatic.  The tremors and leg and arm weakness are my biggest issue right now along with the balance.
 
I go to a neurologist tomorrow and any input would be helpful.
 
Thank you,
 
Carolyn

Tapestryloom
Regular Member


Date Joined May 2008
Total Posts : 169
   Posted 5/20/2008 8:31 PM (GMT -6)   

Carolyn,

I don't know what to say since I am new to this also. It's funny but I just had a baby and my name is Carolyn! All my symptoms started after his birth. I hope you find the answers you are looking for. GL

Carolyn


I am a mother to 4 children; James 7 mo.'s, Davey 2 yrs, Dana 4 yrs, and Anne 9 yrs.  I am currently studying to become a natural childbirth educator.... and just trying to figure out where my priorities are right now.


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/21/2008 7:05 AM (GMT -6)   
I take it your Lyme diagnosis is definite? That you did/do indeed have Lyme disease? Is it possible that really you've had MS for years, and the Lyme is a misdiagnosis? At any rate, I hope you and your doctor can sort out all of this soon.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 5/21/2008 12:57 PM (GMT -6)   
Hi guys,

just wanted to update. Neuro appointment went quite well. He is quite lyme literate and understands the implications of the stupid bacteria and the fact that it can throw your body into auto-immune response. I did have several lyme tests and eventually had a positive (lyme testing is very bad) I have been treating this for 2 years...always a battle...He has ordered an MRI of the neck and is doing the muscle test. He thinks that the eyelid twitch and tremors may well be realted to the foci and he said then it will be folowed by spinal tap....He has ordered various bloodwork also. He seems to think MS is a real possibility. Really havinga tough time with the tremors I hope there is some medication to help this system.

Thanks for the help,

Carolyn

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3532
   Posted 5/21/2008 6:12 PM (GMT -6)   

I am glad you found a doctor that is familiar with lyme disease.  I know that Lyme can cause lesions on the brain as well.  Hopefully it turns out to be something treatable.  Good luck with your future tests and let us know how you are doing.  What muscle test is he doing? They usually do nerve tests I am curious as to the muscle test.

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 5/24/2008 8:11 PM (GMT -6)   
Hi Gretchen,

Thank you for your response. It was actually the nerve test I was confused as to what test he was doing. MRI on neck is on 28th and we are going to expidite to spinal tap as I am in neurological hell right now. having trouble seeing the light at the end of the tunnel :( I am told without the tap we will not be able to distinguish the difference with the foci and I will either start ms meds or have to have a PICC line put back in and do the IV antibiotics daily. Either way stinks. Short term memory is really bad. Tremors and weakness is awful. dizziness and balance are awful....thankfully pain is minimal. I have started getting numb on and off in embarassing places soooooo wierd. I do not know if that is a MS symptom....For the first time in my life I have had to ask for help and my hubby had to help me cut up my food.......I feel so ashamed with my slurring speech even though it is not anything I can control and every day is different thank goodness in (as far as the speech) I am having to nap for the first time in my life even with 200mg provigil. I am so scared. Have not been able to work my business I am a real estate agent and driving etc is tough right now. I am having a tough time keeping up with my 4 month baby. I really need to have my other kids step up and help. My husband is great but I feel like I am really a pest needing help. I always have been the one to set the tone of the household and the strong person and now......not good.
Please tell me with treatment this gets better. Does the spinal tap hurt? I do not care but need to be prepared. I need answers. Both options are not good. I am usually strong. My meningioma (brain tumor has not grown folloing radiation last year that is good) hoped it had gone...boy it has been a long couple of years.
Any suggestions to get through this until I figure this whole thing out?

thanks,
Carolyn

Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 5/24/2008 9:36 PM (GMT -6)   

Carolyn,

 

I’m so sorry you’re having such a hard time right now. It’s going to be hard for your docs to know how to treat this or give you relief until they determine if it is MS or lyme related. It sounds like your docs are going about all the correct testing, and in the meantime please accept your husband’s help. I know it absolutely stinks to be dependant on someone for help in this way, but you need to take care of yourself right now and conserve your energy. It is also important to slow down and be careful when you are weak, having balance issues, and dizziness. I’ve found this combo to be a recipe for a fall, and dealing with injury on top of all these other issues is not something you want. Numbness is very common with MS, and can affect pretty much any part of your body from your head to your feet and everything in between.

 

With regard to meds…neuros will give IV steroids when someone is in an acute MS exacerbation. This may help shorten the exacerbation and ease some of the probs, but won’t affect long-term disease outcome. However, I don’t know how that would affect the lyme. The ms meds slow progression of the disease, but do not directly help with symptoms. There are various meds that are used to treat symptoms and can make you more comfortable. Here is a link to symptom meds and what they are used for. I am having problems with posting links today, but go ahead and copy and paste this url:

 

http://www.msassociation.org/programs/medications/types/symptom.asp

 

Here is some info on tremors:

 

http://www.nationalmssociety.org/about-multiple-sclerosis/symptoms/tremor/index.aspx

 

Here is some info on lumbar puncture. I didn’t find the procedure itself to be too painful, and developed the post-tap headache due to my own stupidity (I flew home the next day).

 

http://www.nlm.nih.gov/medlineplus/ency/article/003428.htm

 

Hang in there okay? Just work on getting through today, and then tomorrow and the next day…it sounds cliché, but just take this one step at a time.

 

Sunny


carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 5/24/2008 9:44 PM (GMT -6)   
Sunny,

Thank you so much. I appreciate your response. Unless life threatening steroids are something lyme sufferers have to avoid...at this point I will do whatever I have to. Is the lumbar puncture going to give us a diagnosis for sure? Thank you again for your support.

Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 5/25/2008 12:58 AM (GMT -6)   

Hi Carolyn,

 

Gretchen gave you some great input on the other thread. It sounds like steroids are really something you should avoid even if you do have ms. I also want to stress again that you will not gain long-term benefits from using them, and apologize for not being too clear about that in my previous post.

 

Unfortunately there is no single test that can definitively diagnose ms, and the path to diagnosis can be long and difficult for many people. The lumbar puncture is only one piece of the puzzle, as are the mris, evoked potentials, clinical exam, medical history, etc. There are also a lot of ms mimics that need to be ruled out before a diagnosis can be made, and I’m guessing that your medical history might add an extra level of complexity to the process. Your doc will take all of these factors into consideration when making a diagnosis. It sounds like you are in good hands with your neuro, and I hope you get some answers soon!

 

Sunny


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3532
   Posted 5/25/2008 8:51 AM (GMT -6)   

Sunny,

Thanks for all your links here.  You are so good an doing searches and finding the good links with helpful information.  Thanks for all the time you put into this.  Thanks for all your support here.  Now get that air conditioning installed so you can keep up with that.  We need you here even on hot days!!!

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006

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