From Minor to Extensive White Matter Demyelinating Disease

[adivinespirit]

From Minor to Extensive White Matter Demyelinating Disease in 8 months?!?!?

Started in late August 07 with fever rangeing from normal to 103, headaches that started at base of skull wrapping around to front and top, nausea, cold sweats, weakness, extreme sleepiness, chest pain to the right with heart "fluttering" all lasting for the past 8 months with varying degrees. Had Lyme, HIV, all standard blood and urine work. Went for a CT of the brain to rule out Meningitis in August as well. Showed minimal white matter disease of "little consequence". Went on to ID Dr. and ENT as well with no diagnosis.

Visual disturbances (pain, moving from side to side with no control for several minutes), and fine motor hand tremors that have progressed to full body tremors from time to time. Went back to Dr. a week ago, more blood work and an MRI with & without contrast. Diagnosis is now "extensive white matter disease, extensive demyelination disease".

What could cause this damage in 8 months? Can it be reversed? I am 41yrs. old woman.

Thank you for any direction you could offer!

Cris

MRI of my brain

ubo.JPG (16.22 KiB) Viewed 365 times

[MG (Admin)]

Could you please attach a representative MRI picture for us to look at.....if you have some FLAIR sequence pictures that would be the best for now.

Also...have you had a lumbar puncture?

[adivinespirit]

Hello,
Thank your for your response. I have a CD Disk of the images from the radiology company, can I email the files to you?

Also the MRI report said "Ventricles are midline in location and demonstrate a normal appearance. No mass-effect or midline shift.Grey-white matter differentation is within normal limits. Exensive T2 and FLAIR hyperintensity is seen in the perventricular and subcortical white matter. Some of the white matter plaques are oriented perpendicular to the lateral ventricles. The findings are hightly suspicious for demyelinating disease. There is no enhancement within these foci of white matter abnormality. there is no evidence to sugest acute/subacute infarction. No intracranial mass or abnormal enhancement following gadolinium administration. Normal flow-voids are seen in the internal carotid and basliar arteries the the skull base. Mild left maxillary sinusitis is notied. Mastoid air cells are clear."

Since I posted, I now am having numbness in my lower legs from the knee down. The skin is numb, my toes are pale and cold. My calves feel "tired" and heavy.

My GP managed to get me an appointment with a neurologist on Monday. He was booked until the end of May, but made time to see me. I gave him the scans, and /went through the exam. He sent me for bloodwork as follows (SED rate, Vasculitis/Rheumatologic Screen with ANA, SSA/SSB, C-ANCA, P-ANCA, DSDNA, SPEP/IPEP, Cryoglobulins, Serum ACE, C-Reactive Protein, and a 24 hour urine.).

No news as of yet . . .
Thanks,
Cris

[adivinespirit]

sorry, i forgot to add that i have not had a lumbar puncture (yet).

[adivinespirit]

update thus far. Most bloodwork has come back all within normal ranges. 24hr. Urinalysis and some other bloodwork is still pending. Next step is a lumbar puncture.

I will add a link to some of the Flair images from my MRI.
http://share.shutterfly.com/action/welcome?sid=0AcuWrNu1aNmLDiA

I get some "surges" of intense "papercut" pains in the top and back inside my head every few hours. The base of my skull is like a knot and usually hurts, but gets worse when the "papercuts" are happening. I will get "hot" and "flush" on my face and head, break out in a cold sweat. My legs then go numb from, the knee down, calves heavy and toes like ice. This is a constant and repeating cycle. My eyes hurt from the back of them, and I do find that I need to sleep after several of these cycles.

I have never had migraines, with the exception of MSG ingestion, but have known about this and avoided it for over 20years. Besides, those migrains feel completely different, and doesn't explain from "minimal" to "extensive" demyelination in a period of 8 months nor all these other symptoms since August 07.

Thanks for your time.
Cris

[Technical Admin]

Thanks Cris,

Please check that you are happy to have your name displayed on the pictures you linked to. For the meantime we have not added the link to the pictures that you sent.

All the best

TA

[adivinespirit]

Hello TA,
Thanks so much for the concern regarding my identity. I added the link above to my post as i am much less concerned about my identity as I am getting help, besides, if symptoms continue to deteriorate, I may need to have those images with my name so I can remember who I am! LOL!

Cris

[MG (Admin)]

I assume you have had a full neurological examination.

If not, you really should see a neurologist and have that done. If you already have seen a neurologist and been examined, please tell us what was found on examination.

Looking forward to hearing from you

[adivinespirit]

Hello,

Yes I did see a Neurologist. He did preform the Neuro workup. I tremored both hands when going from nose to finger, and was off target by a little bit as well. When they asked me to flip my hand from palm to back, against my opposite palm, I was able to complete this about 3 times successfully on each side. I wabbled to my left quite a bit when trying to walk heel to toe in a staight line, one in front of the other. One other exercise was that they asked me to put both arms up, bent at the elbow horizontally in front of me holding my hands level, palms down. My left hand kept "drooping" even though I tried to keep it level with my right.

Other than that, I didn't get the impression that reflexes were odd, and looking at my eyes they didn't seem like they saw anything odd.

I did get my labs back. All bloodwork within normal limits with the exception of the c-reactive protein, which was 1.86. My Neuro didn't seem to think this was any problem.

I am waiting to have a lumbar puncture scheduled at this point.

[MG (Admin)]

In this sort of situation a fuller picture can be gained by the following:-

1) Doing an LP and testing for oligoclonal bands.
2) Checking evoked potentials which test the pathways of vision (VEP) hearing (BAER) and sensation (SSEP).
3) Follow up to re-check your neuro exam and hear of any new symptoms.
4) In some cases, repeating the brain MRI to check for any changes.

At this stage it is likely that no firm diagnosis is possible and that a clearer picture will only come with time.

Have any specific diagnoses been mentioned?

[adivinespirit]

Hello,

Thank you for your continued help!

At first Wegener's was a high probability. However, since the ANCA didn't come back out of wack and the 24hr. urine came back ok, I think the Neuro has dismissed the Wegener's. I do have a long standing history of ear/sinus/lung infections, and this is how it all started in August. I was on steroids and antibiotics on and off over the last 6 months, and felt better at those times. But, over the last 8 months the demyelination has grown extensively from the CT in August. The Neuro also felt that it may just be migraines, but I disagree. I have no history, and with fever, it doesn't make sense to me.

I am "falling apart" rather quickly, and most of the time my feet are ice cold, and my legs now numb from mid-thigh down. Headaches are like a firework sparkler pattern, with all the little sparks feeling like papercuts on my brain. The chest pain is getting more often as well.

Thanks,
Cris

[MG (Admin)]

Well it seems that for now you need to wait for the follow-up and other tests to come back as I mentioned in my last post.

Please update us as things become clearer or be in touch if you need any more advice.

All the best

[adivinespirit]

Hello,

I have the results of the lumbar puncture. All tests are negative, including the banding.

My symptoms continue to get worse.

I have been reading information regarding Lyme Disease. I seem to fit just about every symptom, but the results are negative. My gut tells me that I need to see if there are more reliable tests for this available.

In one way I am glad that I have the MRI's showing the damage since the CT scan in September, and it is scientific proof of "something" destroying my white matter, otherwise, I feel that I would be "ignored" just by merely what I say about the symptoms.

Where do I go from here? Another Neuro? Infectious Disease? There is something attacking my body since August of 2007 and is winning this battle right now . . .

Thanks for any suggestions!
Cris

[MG (Admin)]

Please send us the exact results of the LP.

How many MRI's have been done?
When was your last MRI?

[adivinespirit]

I have an appointment with the Neurologist on Wednesday at 11am. I will get copies of all the test results from the LP. The LP was taken about 3 weeks ago, and just received the results from the cultures today.

I had one CT in Aug/Sept. and then had the MRI with/without contrast in March. Those are the images that are attatched in the thread. I have not had another MRI since March. With how much worse the headaches are, and the worsening of symptoms, I am actually nervous about getting another MRI and seeing what additional damage has occured . . . .

I will post the results on Wednesday.

Thanks,
Cris