So tired of being a ping pong ball

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Once bitten, twice shy
Regular Member


Date Joined Aug 2011
Total Posts : 30
   Posted 4/29/2014 9:10 AM (GMT -6)   
Hi everyone, I'm new here and this is my story.
Three yrs ago I started having heart fluttering, joint aches and dizziness, after 6 months they finally diagnosed me with Lyme. I started treatment of abx and felt better for a short time. I then went to a LLMD and continued treatment for the next 2 yrs, including IV abx. I felt better at times but never fully recovered. After 2 yrs of treatment and driving 3 hrs to see this Dr. I discontinued treatment due to never fully feeling good. I have had 4 MRI and they all show 4 lesions on the brain, but they have not changed in size and no new ones. The last MRI now shows a "black hole". My local ID dr. says that I am no longer dealing with Lyme and that I have MS. I have been to 6 neurologist in the past 3 yrs and only one says that I have MS, the rest tell me that it is still Lyme even though the test for Lyme have come back negative. I have had a spinal tap and that showed MS, but was told it could be a false positive because of the Lyme. I live in Florida and have even flown to Ma. to see 5 specialist there. No luck. I am at wits end. My symptoms are extreme dizzy, I feel like a tree blowing in the wind, heart fluttering, tingling up the back of my head, numbness in my legs and hands, weight loss, shooting pain up the left side of my head, extreme fatigue, can't drive due to the dizziness, forget the easiest of words when talking and spelling, feeling like I'm shaking inside, hot flashes, feeling like I'm not in the moment, chest pain, can no longer wear a bra feels like my rib cage is being crushed, hip aches, knees feel like they are freezing from the inside out. I think there is more but for now I think that is enough. Any input would be appreciated. Just to let you know I have tried acupuncture, massage therapy, homeopathic therapy, and western medicine.thanks everyone

voodoodoll
Regular Member


Date Joined Mar 2014
Total Posts : 49
   Posted 4/29/2014 10:19 AM (GMT -6)   
I'm definitely no expert on MS because I was just diagnosed in February, but I have some of the same symptoms as you do. I have 2 lesions..at least as of my last MRIs--I get 2 more tomorrow. I have had dizziness off & on...mine is normally while driving. I will all of a sudden feel like everything is moving like water--nothing seems stable. Your "tree blowing in the wind" description reminded me of this floating type of feeling I have. I have numbness on my left side predominately--sometimes spreads to the right. When my head/face have numbness it feels like a tingling feeling. When the top of my head gets that feeling it reminds me of worms or something slithering all over my scalp...very creepy sensation. From my neck down it is just numbness with no tingling. I say the wrong words occasionally when talking & sometimes will slur a word or throw in a wrong vowel sound which is very aggravating. I had chest pain before I was put into the hospital for 3 days of IV steroids--it was a very tight muscle pain that was just under my ribs (where pancreas is) and wrapped around my left side to the middle of my back. It was painful like a muscle cramp & hurt to raise my arms. I'm dealing with fatigue by compensating with more caffeine. I was diagnosed with MS very quickly...I hope you get some answers soon. Good luck!!
***********************************
Diagnosed with MS Feb 2014
Copaxone 20 mg daily injections Mar 2014

Once bitten, twice shy
Regular Member


Date Joined Aug 2011
Total Posts : 30
   Posted 4/29/2014 3:11 PM (GMT -6)   
Thank you for your reply where you ever diagnosed with Lyme disease

voodoodoll
Regular Member


Date Joined Mar 2014
Total Posts : 49
   Posted 4/29/2014 3:32 PM (GMT -6)   
no, at first they thought it may be my heart b/c left side numbness & pain around my chest. I went through several tests for that but everything came back great...the cardiologist said my heart is fine & healthy....said the doctor needs to concentrate more on MS. My first brain ct scan showed spots, but most they think are caused by migraines...i've had those on & off for years. after mri though they spotted one active lesion on my medulla & one nonactive on my cervical spine. thats when i was immediately put into the hospital for 3 days of iv steroids, more mris & the lumbar puncture. diagnosis was right after.
***********************************
Diagnosed with MS Feb 2014
Copaxone 20 mg daily injections Mar 2014

Once bitten, twice shy
Regular Member


Date Joined Aug 2011
Total Posts : 30
   Posted 5/5/2014 7:34 PM (GMT -6)   
Do you feel worse after eating at night? I just finished my 3 days of IV steroids and I'm feeling like heck. It took about 30% of the leg cramps away but now my ankles are swollen and hurting and have a nice size lump in my arm where the IV was. My biggest complaint is the dizziness have you found anything to relieve that? I dont even drive anymore. This MS thing is hard, I wish you the best of luck
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