Update Please Bob Hilton if you could pls pls read, or anyone out there I really need help

[kerryag]

Here is an update, below is kind of in a nutshell everything going on, well back in june they did a biopsy of my hubby's lacamil gland looking for sarcodois, inflamation found, but biopsy negative, well his pulmonogist is now looking for the same thing sarcodois, he had another nuclear scan and it is exactly the same but this time she concentrated on lungs and the report suggests findings consistant with sarcodious but not a diagnose so now she wants to do a lung biopsy, fine it is scheduled for april 11th but this is what they told us about the lacamal gland also, which btw is still imflamed on the nuclear medicine scan, how do you get a diagnose these days to get on some kind of treatment ????   My husband is also seeing whites spots again when he looks to the left, along with the headaches, dizziness, ringng in ears that never subsided the vision was one of the first things to start this whole nightmare last feb 06, but around july of 06 subsided now it is back,  I am really getting exhausted and need some help, also he had a pulumary function test today short study, and his breathing came back restricted and obstructed.  His nurolgoist seems to avoiding us, like he is montiring him but thats it.  Does anyone know which direction to point me in,  my husband memory, comprehension, and understanding functions are really fading.
  please read other post for the basics posted about 1 week ago

[BobbHilton]

Dear Kerryag,
     Though, I prefer not to go to the e.mail level, but I see how you are desprate to find some answers, and I know God will never forgive me if I did not try harder to help you in this situation and get this younge man back on his feet.
    As I mentioned in my prevous e.mails that only one decade of my medical life was in intensive care unite dealing with critical patients like your husband, while the rest was with regular Neurological diseases, and you would be much better helped by a Neuro- intensivist and the current following team!!!.

    I will e.mail you as soon I'm back this afternoon

    God bless
    Bob

[kerryag]

Here is a radiologist report for the scan done in May, I dont have the one done 2 weeks ago, but have requested it so I can send it to you.  I will definately discuss the information you gave to me last night with the doctor but wont see her for awhile, I will also discuss this with the Pulmonogist on april 11, and his neurologist on april 20.  I was wondering if it wouldnt be to much to ask and if It dont sound to selfish if I may have your email address or I will give you mine, I just dont want to lose contact with you as I feel so relieve to finally have someone to comminucte with it has been awful going through this and I am just so scared and exhausted I also have 3 year old twins and a 5 year old.  I will post the report once I get it, my email is ***@****. Again thank you soo much.




======================= NEW IDX RADIOLOGY RESULTS ============================
INFECTION, WHOLE BODY & SPECT ORDER MD: HREIB,KINAN ORDER REASON: ? SARCOID GALLIUM SCAN-
READ BY: RAJA MD,SHANKER G
FINAL: GA-67 IMAGING FOR SARCOIDOSIS.
HISTORY:
44-YEAR-OLD MALE WITH SUSPECTED SARCOIDOSIS. TECHNIQUE:
THE PATIENT WAS ADMINISTERED 6 MCI OF GA-67 INTRAVENOUSLY. 72 HOURS DELAY WHOLE BODY IMAGING FOLLOWED BY SPECT IMAGING OF THE HEAD AND NECK WAS OBTAINED.
FINDINGS:
THE WHOLE BODY IMAGES DEMONSTRATE MILD UPTAKE OF TRACER IN BILATERAL LACRIMAL GLANDS SLIGHTLY MORE THAN THE NASOPHARYNGEAL ACTIVITY.
THE LUNGS DEMONSTRATE ILL DEFINED SUBTLE TO MILD DIFFUSE GALLIUM ACTIVITY THROUGHOUT BOTH LUNG FIELDS, HOWEVER, THERE ARE NO FOCAL ABNORMALITIES IN THE LUNG PARENCHYMA, MEDIASTINUM OR THE HEAD AND NECK LYMPH NODE STATIONS. THE SUBSEQUENT SPECT IMAGING OF THE HEAD AND NECK AND CHEST AGAIN CONFIRMS PROMINENT Lacrimal Gland Activity
IMPRESSIOn
Bilateral Lacrimal gland  ACTIVITY MORE than the nasopharyngeal uptake would be  SUSPICIOUS But NOT DEFINITIVE FOR SarCOIDOSIS. Bilateral DIFFUSE MILD LunG ACTIVITY AGAIN COMpatible with but NOT DIAGNOSTIC FOR SarcODOSIS.







IGG serum                 753    lo     (768--1632)

IGG CSF 3.3m     (0.0-6.0)
alb serum 4130 m  (3500-5200)

ALB CSF 28     (0-35)
ALB INDEX 6.8 (0.0-9.0)
IGG INDEX 0.65  (0.28-0.66)
CSF/IGGSR 2.2  (0.0-8.0)

csf igg/alb      0.12 (0.09-0.25)





OLIGO BANDS NEG (*m)
Date Time
NOTES:





(*H,*Hi=Critical High)


(*L,*Lo=Critical Low) (Hi=Abn Hi) (Lo=Abn Lo) (*=Abn Alpha) (#=Delta) ** CONTINUED ON NEXT PAGE **

[BobbHilton]

""his neruo is very compadant""??

   and thinks that MS cannot be diagnose until a 2nd event has happened? try to specify or write the diagnosis down for them , because in
1- Rarely the acute fulminant multiple sclerosis (Marburg variant), with axonal
loss and massive macrophage infiltrates
2- Acute disseminated hemorhagic encephalomyelitis
you dont need a second episod!!

  I think because of you questions they will have time to review it further for next tim...its always the time issues...doctors love to help but they are swamped with massive numbers of patient!!

  Please post what ever you have even if you could the report of the neuro rdaiologist

   Bob

[kerryag]

Bob, first I want to say thank you and thank you again for taking the time to respond.Second I want to say he had 2spinals done right away WBC 77 thousand and demilation abnormaltiy.Blood all okay even wbc.  Then had 3 spinal wbc went down to 33 thousand still high demilation abnormality.  4 spinal he was dry 5th dry also 6th still way too high wbc, demilation abnormaltiy.  Something an acu was also high consitantly.  This ishow it was left about 3 months ago, a pulm dr is pulling it together now, seems as though neru dr given up just has nuclear med scans done every 6 months to check on the inflamation which is there in lungs and lacamal gland and also liver,  heart.  Lesions in brain all all lobes no change not active. in 7 hrs we have a consult at a MS clinic?? Do you think I am heading in right direction.  Also in june 2004 he had a masive PE after laparoskpy surgery for reflex.  Was talk aobut a protien c and s deficency and lupus back then on cumadion for 1 year but nothing panned out, and he went on living life with difficulties breathing in humid weather,  they said went through heart peach pit broke and wedge in lower lobes of lungs (multiple)  at the time they said he barretts esphogus.

[BobbHilton]

Whenever is the cells in the CSF is this high plus demylinating changes and the acute bacterial cause is excluded then the diagnosis could be one of the following
   1- Sarcoidosis
   2-Lymphoma (needs a large CSF sample for a flow cytometry)
   3- HIV or HTLV1 infection
   4- Rarely the acute fulminant multiple sclerosis (Marburg variant), with axonal
       loss and massive macrophage infiltrates
   5- very less likely is Lyme disease
   6- Acute disseminated hemorhagic encephalomyelitis

    Ask your doctor about them

    Bob

[kerryag]

Well went to the clinic and it was an associate of the neuro he had been seeing, she said without all the records etc and examination she couldnt say anything but, she seems to think that his neruo is very compadant and thinks that MS cannot be diagnose until a 2nd event has happened and that his symptons have not gone away that it is not MS, but she did talk about sarcoid and I asked her about the flurmant MS or something you mention and she said no it wouldnt be that because honestly her response didnt make sense, I said well isnt it a rapid, progressive type of MS and she told me no, anyways she wants time to review records and then for us to come back for a 2 hr consult.  She kind of rushed us and said she likes to stay on time for her appts and we were running into her next one so she said we would talk more next time and I didnt get to ask her about the paranissue thing.  she has us in as a 2nd opinion and honestly i got the feeling that she took it personal against the neruo that is her collegue and it wasnt meant to be.  Well his pulmon dr is doing a lung biopsy on april 11 for the sarcoid because the nuclear scan showed inflamation.  Today's dr also mention because the lesions havent been active that would mean its not MS even more, and would more look like sarcoid.  Just to let you know he was tested for HIV, aids, syphllis, hepatisis, herpes, all those infectious diseases , arsonic, everything came back neg.  i can actually give you some numbers from the report.

wbc 14.6 *(hi)
PDW 45.8 (lo) says citical low

absolute neut 10.6 *hi
under routine hematology ESR 19 hi

under coaglation studies
protime 10.0(a) refrence units (9.0- 10.9)
APTT      24.6 (b)   (23.8-30.6)

D-dimer <0.43 (a) cricital low

cellcount csf
cerebral spinal colorlesss, clear, 2 tubes total volume 6 cc

cellcount csf
rbc 95 (hi)
wbc 40(hi)

routine chemistry
co2       34 hi
chol 229   hi

HDL 31  critical Low

calculated LDL   162  HI
co2   33 HI
TP 6.1  LO
SGOT(ast)  11  Lo

all drug abuse , urine all negative

body fluid testing

glucose csf 65
protein CSF  60  Hi

hbsag neg
hep b core m neg
hep a igm neg
hep c viral ab neg
  then there is  a chemistry sendout  anca < 1.16 (H)

then there is a anca's i vasculitic syndromes more results if you want them i will post.

[BobbHilton]

do not forget the Paraneoplastic I mentioned earlier!

  Bob

[BobbHilton]

In the first decade of my medical experience I worked in a well equiped hospital (at that time) especially in the intensive care unit till I got infected by tuberclosis and got treated for almost a year...during that time , nothing was worse than not having the time to gather all the medical teams around the patient's bed to disscuss the cases together..is it still the case??...

  From your description , I cant understand how a healthy man gets all these complications from an ear infection..it could be that there is something depressing his immune system, and if every thing (even sarcoid) is excluded and he is not getting better then his body either shocked with a first major illness and requiring a longer time to recover (the routine labs and the vital signs would be stable , but not the memory , because a viral encephalitis could affect it for a quite long time) or during the illness he had a rapid shift of his Sodium/Osmolarity  level down or up? or he has a paraneoplastic syndrome so as his doctors to run the specific blood antibodies on the serum.

   The other thing,I'm not sure if you could do, is to see if an experienced general internist could see his case in details and tie things together and communicate with the different subspecialities  and direct the case afterward

  Bob  

[kerryag]

Hi Bob, yes this is kind of a update posted from the orginial post on 3/21 with my same name kerryag.  I am new to this and didnt know how to do it together.  If you read that first it will make sense. but in a nutshell he started off with ear infections we thought in feb 06 then got worse with vision problems, memory problems, dizziness, mental changes, balance, cordination,gait, etc.  Brought to ER by ambulance and oh yeah hearing loss, back to it then to local hosp. they said stroke found multiple white lesions on all lobes of brain ruled out stroke, brought in infectious dis. tested for everything all neg.  then neuro said MS transferr to MGH in boston, they didnt agree said late stage lymne and discharge he got worse got care elsewhere, wehre they didnt agree with MS, checking for sarcodious, did lacimal gland biop neg, now pulm doing a biop of lung, had a restiricted breathing pulum. function test the other day with obstruction.  Drs dont seem to be getting together treating each symtpon as its own, he was a healthy 44 yr old when all this happened, now vision problems subsided, but diziness, headache, body aches weakness, and ringng in ears constant, other day blurred and spots came back in eyes, and pain in left side of head down in cheek jaw neck shoulder and arm.  any advise or help.

[BobbHilton]

Hi,
  I'm sorry I read this at this late hours, where my brain kind of shut down, but I cant have a grip on what exactly you want to describ (some cases are very hard to describe even by doctors)..I think you want to say that he got deteriorated from his base line due to an encephalitis which is most of the times  a viral thing, then due to other findings he was thoght to have a fulminant type of MS? so they are trying to rule out other condition like Sarcoidosis?
what about Vasculitis? or a paraneoplastic issue?
the differential is broad and a bed side assessment is crucial to decide which way to  e.g Inflammatory/Rheumatologic causes could be Eale