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cheryl1972 04-23-2008 08:15 PM

Mystery Diagnosis
This is regarding my dad. He's 60 years old. He's had symptoms of confusion, a hunched over gait, vertigo, shuffling while walking, high blood pressure (usually runs low) sometimes dazy and soft spoken. He's been in the hospital now for 5 days and they cannot figure out what's wrong with him. He's had every test you can think of and the only one that showed anything was an MRI - which showed a lesion on his brain. Now he even needs help getting up to go to the bathroom and he's still very confused. His spinal tap showed elevated protein and clear fluid. Everything else at the preliminary was normal. He's only had these symptoms for about 2 weeks now. It seems like they have ruled out stroke and TIA. I've heard other possibilities of MS, Alzheimers, Parkinsons, toxic exposure and tumor. Does this sound familiar at all to anyone? He's supposed to be transfered to another hospital tomorrow because the one he's in does not have an answer.

Thanks for your help.

AnnD 04-23-2008 08:51 PM

Re: Mystery Diagnosis
Yes it sounds very familiar! When my dad(age 90 at the time) accidentally fell...I saw him trip, fall and hit the front of his forehead and within hours he was someone else ... extremely confused and combative. I sat up all night with him ..he could not sleep and was extremely restless until morning with some symptoms calming down. Took him to the doctor first thing and he was diagnosed with a slight concussion however if I had not just happen to see him fall none of us would of really of known why he was so strange. The concussion cleared up and he was back to his normal self but then he fell again and again and eventually a fall caused a brain lesion and was bleeding into the brain. Just that lesion caused him to be weak and unable to walk and very confused and that never stopped and he had to go to a nursing home. As for your dad...I am guessing whatever caused that lesion is what is causing him all those symptoms...I don't know if that will heal for your dad?..what do the doctors say? I am sorry for all that is happening to your world because he is still so young. good luck.

cheryl1972 04-24-2008 07:09 PM

Re: Mystery Diagnosis
He hasn't fallen though.

The doctors don't know what it is.

Things have not gotten better since he's been in the hospital.

Thanks for your insite.


music47 04-24-2008 09:35 PM

Re: Mystery Diagnosis
Hi Cheryl

I am sorry about your Dad. I know how scary it is to not know what is causing the symptoms.:confused: I am praying for him and you that the dr will diagnose his illness soon and it won't be anything serious. Hang in there Cheryl.:angel:


cheryl1972 04-25-2008 08:20 PM

Re: Mystery Diagnosis
Thanks for your replies and thoughts ticker and music.

My dad has been moved to Henry Ford Hospital, which is #1 in the state for neurology. My mom says that he will have the same battery of tests done. Then she said it sounded like they were going to send him home after. I said "Oh no they're not!" They can't send him home if we don't know what he has and how to treat it!

Can Lyme disease be detected in a regular blood test? Or does he need to go to a specialist?

Thanks for everyones replies!


ticker 04-26-2008 08:04 AM

Re: Mystery Diagnosis
Hi Cheryl. Unfortunately, there is no completely reliable test for Lyme disease and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first.

The Western Blot is a better test when done at a Lyme lab such as IgeneX in Palo Alto, CA. They use more sensitive tesing and list more bands on the results. This test lists a series of numerical bands with a + - or IND rating after each one. The CDC requires several bands to be positive for the test to be positive; however, many people who have Lyme do not have this many bands. What is important is which bands are positive, some are specific for Lyme.

You can order the test kit from IgeneX, have the blood drawn by a willing doctor, and send it in. It typically takes about three weeks to get the results back, and they will be reported to the doctor who sent it in. This would be a good first start unless you want him to see a Lyme doctor. If you would like a recommendation, let me know. Sometimes it takes time to get an appointment.

I hope you get answers soon. Your father is so lucky to have your support.

Braveheart07 04-26-2008 09:43 AM

Re: Mystery Diagnosis
Cheryl, Hi-
I agree with Ticker---Absolutely get a blood test run by IgeneX...either find a lyme literate dr (LLMD) or get the test kit from IgeneX themselves---probably faster to find a LLMD----this board is an invaluable resource for many issues, including Lyme---if you search past posts you'll find Dr recommendations for many states, or you can start a thread, asking for people from your part of the state for their opinions on Dr's.---but "pick peoples brains" on this forum--they are very knowledgeable, and compassionate...
Best of luck to you and your Dad----Doug

04-26-2008 05:14 PM

Re: Mystery Diagnosis
Cheryl: perhaps I'm missing something, but the fact that an MRI shows a lesion on his brain, with elevated spinal pressure and proteins in the spinal fluid would seem worthy of further investigation.

Have the doctors satisfied themselves that the brain lesion has no significance?

cheryl1972 04-26-2008 08:38 PM

Re: Mystery Diagnosis
They are not sure what the lesion is from. Everything is still so up in the air right now. He hasn't improved at all since he's been in the hospital.

cheryl1972 04-27-2008 06:53 PM

Re: Mystery Diagnosis
Now the doctor is saying possibly cancer.......

cheryl1972 04-28-2008 09:50 PM

Re: Mystery Diagnosis
We finally got some answers tonight. He had a procedure done today to determine whether he had blood clots in his vessels going to his brain. Sure enough he did. It's still very serious but at least we have some answers and clarity as to what is going on with him. Evidently he was born with it, but it has gotten worse over the years (the vessels are supposed to get smaller and because he has clots they got bigger, which isn't good). They have him on Heprin right now (this should make the clots go away) and are monitoring him. We should have more answers in a few days. He will probably have to have radiation therapy to close up the blood vessels after the blood clots are gone. Evidently this is very rare, in fact they probably didn't know what it was because most people in this situation are in a coma. So he's very lucky.

They don't know if this will cause permanent brain damage or not. Time will tell I guess.

ticker 04-30-2008 07:02 AM

Re: Mystery Diagnosis
Hi Cheryl. I am glad you are getting answers and a plan of action, I know it is a relief.

I hope his treatment goes well. Keep us posted on how he is doing okay?

cheryl1972 05-02-2008 05:43 AM

Re: Mystery Diagnosis
Thanks Ticker.

hermes370 05-05-2008 06:12 PM

Re: Mystery Diagnosis
sounds like your father had some sort of AVM(arteriovenous malformation) or carvernous angioma that clotted off and that they are going to stereotactic radiosurgery to remove it .. which it is good that they have a diagnosis to work with and treatment plan

but out of interest, what type of MRI was done that initially found the "lesion" .. was it a MRI of the brain alone, an MRI/MRA of the brain ... and where was the lesion ... it's weird that the neuroradiologists couldn't make the diagnosis or better guide the neurologists in regards to the diagnosis .. especially if it turned out to be an AVM(radiologically they are very different from stroke lesions, MS lesion and cancerous lesions for the most part) ... it must be one large lesion to give such generalized symptoms ..

by the way, did the neurologist suggest to you why the elevated CSF protein ... you can see this in lots of things like infections, intracranial hemorrhages, MS, intracranial cancers, less likely with a clot .. and if he's on heparin then he must have a clot of some sort

best of luck to your father

cheryl1972 05-06-2008 10:17 PM

Re: Mystery Diagnosis
Hi Hermes,

Good catch! He does have AVM! He also has the blood clots besides the AVM. They have put him on blood thinners to "dissolve" the clots and will do surgery for the AVM after that.

They did an MRI of the brain, which is how they found the "spot or lesion", which turned out to be blood clots.

He's out of the hospital but will most likely have to retire. His personality is totally "off" most of the time. We'll have to see what happens after the surgery, or if this is how he will be the rest of his life. If so, he'll need 24 hour care for sure.

Thanks for inquiring and the insight!


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