Had Lyme for 15 years and just started getting more pronounced jerking of muscles. Had had real dizziness and now have had an MRI as requested by my doctor, not Lyme doc. The results came back saying that I had "multiple foci of hyperintensity in the white matter of the cerebral hemishperes and that most are located near the white matter junction" and then goes on to say that myelin aging disease should be considered. Is this Lyme, MS? Has anyone heard of this? Thanks..I'm kind of freaking out.
Posted by seibertneurolyme (Member # 6416) on :
Very common MRI results for many Lyme patients. Very difficult to say 100% if it is Lyme or MS.
More important question is to look at overall symptom pattern. Which diagnosis explains the majority of your symptoms?
The bright white hyperintensities or lesions definitely indicate that you have a disease which is affecting your nervous system.
For some people these lesions may go away with adequate and aggressive treatment.
There are some other things which can cause these brain lesions -- celiac disease (gluten intolerance) is one I have read about.
Bea Seibert
Posted by lalyme (Member # 8964) on :
The symptoms are more cosistent with Lyme. But the twitching of the nerves has incesed so much that it makes me very uneasy. If it is Lyme will the "aggressive treatment" be in the form of intervenous antibiotic therapy?
Posted by lalyme (Member # 8964) on :
Thank you very much. The intial report said "foci of hyperintensity in the cerebral hemishperic ehite matter" and goes on to check for demyelinating disease...so as you can imagine I have spent the better part of 24 hrs panicked. Thank you and it does make me feel a bit better. Does anyone know what the treatment is for this as far as Lyme goes?
Posted by nat (Member # 8883) on :
Hi- I just had an MRI done about 3 weeks ago..I was trying to finally find a reason for my constant headaches/migraines..My report showed the same small lesions in the white matter "noted small subcortical punctuate T2 hyperintensities of the white matter...blah. blah...chronic demylinating disorder..
I was freaked out too..followed up with a neurologist who didn't seem too concerned-said it was likely the lyme and/or migraines. My LD wasn't concerned either, so I am trying not to be. Neurologist is sending me for another MRI in July to see if anything has changed. Never did find out why I get all the headaches either... Natalie
Posted by Littlesprout (Member # 7406) on :
I also have lesions from Lyme/Bart/Babs. Let them call it MS, then you could get ins to pay for IVIG treatments. It will help your immune system and reduce the brain inflammation.
Also check into LDN.org, B1, B12 injections. Others use BVT along with abx. Just don't depend on abx to get you through this, you need to support the nerve repain process
Posted by lalyme (Member # 8964) on :
I wanted to thank you all for responding. You are awesome people. I really appreciate it. Seeing neuro tomorrow. Hope everyone feels better
Posted by shazdancer (Member # 1436) on :
Check HERE for more information about MRI, SPECT, and PET scanning.
HTH, Shaz
Posted by bettyg (Member # 6147) on :
Shaz, wonderful site info you provided.
Please copy/paste this info to TREEPATROL'S NEWBIE LINKS; and ask that he add to his links.
Would be a great addition to another site I sent him the other day on MRIs/PET/CT scans. Thanks so much.
Posted by Raymond (Member # 13980) on :
My MRI indicates scattered punctate T2 hyperintense foci are present by lateral frontal centrum semiovale and corona radiata, most consistent with microvascular change. No evidence of mass or stroke or extra-axial hemorrage. No mass.
Lyme or something else, vasculitis?
Posted by Alv (Member # 15192) on :
My son has the same thing .He has neurolyme and BABS and BART.
He is in the treatment with antibiotics.Very common with lyme .
Was told from the Dr that will have improvement on Antibiotics in the future.well the MRI came up like that after 7 month of antibiotics .Imagine what was before that!
Treat it .I am going to ask for B12 shoots.I get them and is helping.I will ask if he can have them too.
Just my Two Cents.
Posted by laura j (Member # 14257) on :
lalyme,
May I ask if your MRI was done with or without contrast? I had one done that was supposed to be w/ and w/out but the radiologist didn't sign off on the infection and wasn't present at the time so I had to get it done only w/out. It showed nothing but I'm thinking it was a waste of my time having it done w/out contrast.
Posted by Michelle M (Member # 7200) on :
quote:Originally posted by laura j: lalyme,
It showed nothing but I'm thinking it was a waste of my time having it done w/out contrast.
Laura, I wouldn't say this is so.
I have had two done. The first was without contrast and showed multiple lesions.
The second - a year later -- was done both with and without contrast.
Lesions were evident whether there was contrast or not.
So, I don't know if I would repeat it just because it was done without contrast. Unless my LLMD wanted me to, of course.
Michelle
Posted by Tincup (Member # 5829) on :
LA...
Those lessions are common with Lyme. They can be diagnosed as MS. Years ago they weren't considered to be anything but MS related. But now SOME folks know better.
Also note.. there should be NO difference in the MRI... with or without contrast dye.
I have several folks in my family highly allergic to the dye (stopped breathing) and chose NOT to risk it.
I was told by head of hospital radiology that the ONLY reason they use contrast dye is because it is easier for the puppy mill docs.. and it is used to run the reports by them faster to make more $$ for the hospital facility.
In other words.. you ABSOLUTELY need NO dye. It is for THEIR benefit only (making it less time to read the MRI's).
And with the major problems they are finding related to that dye now.. and the law suits over it... I would NOT risk it, ever.
Now.. they may be VERY pushy and VERY nasty about it... so do be warned.
I had one guy argue with me (foolish him) and he go so mad when I just kept saying "NO" dye... that he went in the back office and called my doctor to get approval that way.. and was trying to go around my wishes so he could use the dye.
After he made the call he came out all puffed up and proud of himself for pulling a fast one... and was telling me he HAD to use dye cause my doctor ORDERED it.
I told him to go fly a kite and called the hospital admin and told them while I was there what he did.
They removed him and got someone else in there who did it without the dye... so be warned they can be very insistant and nasty too.
Also note-
With proper antibiotic treatment... IV and/or orals (each person is different- so are the meds they react to different)... the lessions I had went away.
All gone.
Posted by Raymond (Member # 13980) on :
I had a doc tell me w or w/o contrast depicts different cuts cuf the picture. Personally myself give me the hi resolution w/o I believe smaller cuts. Just pray it gets all all well in the long run and a proper doagnosis is made....
Thanks for the posts it's a little reassurung for some of my aliments.
Posted by feelfit (Member # 12770) on :
I also refused contrast on my MRI's. My gut told me that it didn't seem the thing to do. One very nice Tech told me that it wasn't necessary because they got really good pictures of my brain w/o it.
Ultimately, the decision is uniquely our own. I prefer less poison.
Feelfit Posted by seibertneurolyme (Member # 6416) on :
Way to go Tincup!!!!!
Too many people think that just because a doc orders a test you have to have it done. It is still your choice.
Some things are worth standing up to the docs about and sometimes it is easier to just go with the flow.
The way I look at it you are paying the doc to give you advice. It is up to you whether you take that advice. There might be a financial reason to either postpone or delay a test or you might want to research alternatives or as in your case a potential allergic reaction is a very serious consideration.
The problem with MRI's is that neurologists try to interpret them to fit whatever diagnosis they have come up with. Hubby has 4 or 5 lesions. MRI reports have said they were due to everything from migraines (has never had one) to microvascular disease to Lyme -- a couple even concluded that overall his MRI was normal due to aging (he is only 53).
In total hubby has had I think 10 MRI's over the last 7 years. He had at least 3 or 4 during the first 2 years when nonone had a clue what was wrong with him.
At least 75% of the 20 or so neuros who have seen those reports end up putting in their office notes that MRI's were normal. If I am in a grumpy mood (now that HIPAA is in effect) I make them go back and change their office notes to include the fact that the MRI's were not "normal" -- that white matter lesions were present.
Bea Seibert
Posted by TickTock4422 (Member # 12553) on :
Had an MRI today with and without.
Taking away the clinical symptoms, how does the MD make a determination whether 'white matter' is MS or Lyme?
I guess since I am not responding positively to treatment [7 months Rocephin and flagyl], I am being told to see a Neurologist to rule out MS.
I was appalled to hear that other differential diagnoses had to be considered what is to me 'early in the ballgame' and am so upset
since I tested IGENEX positive for LYME and now I have to think on the MS possibility. Usually,
it's the other way around. MS pt.s are sent to rule out LYME.
I have jerks [like a baby kicking hard], hyperactive reflexes, twitching, and of course
arthritic widespread muscle pain and severe migraines which puts me in the Neuro Lyme catagory.
But, can these be MS or Parkinsons? I have not read these symptoms specifically for MS. If I
have MS, I am going to freak out as I am not sure of anything right now.
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