Re: new to this group

[Guest guest]

hi angie

welcome!

BU means the OUTSIDE of the uterus has an indentation (hence 'heart-

shaped) - SU means there's a wall (either partial or total) that

runs from top to bottom INSIDE the uterus 'dividing' it in 2

cavities - some women have only one of these anomalies, some can

have what some ladies here call 'a combo' i.e.: BU + SU =

heartshaped on the outside + wall inside

BUs are usually related to preterm labor and growth restriction,

sometimes incompetent cervix - SUs are usually related to mc,

placental abruption (maybe what happened to you?), malpresentation

(i.e. breech) and some other problems i don't recall (pls look for

my post from yesterday where i mention this as well as some

statistics).

diagnosis is tricky - you can see the inside of the uterus with a

HSG (hysterosalpingogram - like an x-ray with a dye injected in the

uterus) and you can have also an MRI i think to see both inside and

outside shapes - but you'll see all over this place that the gold

standard for identifying BU or SU is an outpatien surgical

procedure: laparoscopy/hysteroscopy (lap/hyst) that's done under

general anesthesia -

treatment depends on what you have - surgery for BUs is not

recomended - careful monitoring of the pg is a must - SUs can most

of the time be fixed with a resection done at the same time than a

lap/hyst ....

in my experience most OBs are not experienced in MAs - you should

try to see a RE (reproductive endocrinologist/fertility specialist) -

they are more knowledgeable about these problems

i had been misdx as BU long ago - had a normal 1st pg that ended at

33 weeks with a placental abruption and my 33 weeker (now 4) born by

c/section at 4lbs 3 oz - i then had 2 mc and found out i had a SU -

i had a lap/hyst/resection last 3/05

several women have normal pg and even full term babies with septums

in place and/or BUs but others may have different problems down the

road ..... you should first get an accurate diagnosis and make your

decision based on that .....

best of luck!

gabi

[Guest guest]

hi nickey

my dr told me i didn't need a follow up HSG or anything else after

my 1st surgery (3/05) but after a chemical pg (6/05) and no luck for

the next 2 months he went in with a hyst + u/s guidance and found

some scar tissue that he removed along with whatever was left from

the septum - i had to wait for 1 cycle and then TTC for 3 more and

nothing happened (i'm 38 so conceiving can take way longer i

guess) ... so anyway since i was set on going the IVF route he

decided i should have a SHG (sonohysterogram which is NOT the same

as HSG = hysterosalpingogram) - the SHG is an u/s with some saline

injected into your uterus through a very thin catheter -

i had the SHG in september and everything looked good - no scarring

and no septum left - i'd say my uterus is 'normal' -

until i had this SHG done i was always thinking that maybe scar

tissue had grown again or even the septum (although i think this is

highly unlikely) or maybe there was some leftover-septum still there

so i think the SHG was great cause it gave me quite a bit of peace

of mind -

maybe you could ask your dr about having one done in a few cycles if

you are not successful at TTC ? just a thought ...... you could also

ask for one BEFORE they clear you to TTC again so at least you'll

know you don;t have to worry about these 2 things ....

the procedure (SHG) is not surgery and it was painless - it was done

in his office, i didn't need any advils or anything else before it -

it just involves a speculum (you can't avoid those ) and a thin

catheter + the saline - you may feel little cramps while the saline

is getting into your uterus but at least for me it was very mild and

the whole thing was over before i could even say i was a little

uncomfortable ..... so you could ask him and see what he thinks

about it .....

with respect to pl. abruption - when i had that problem (and no one

had related it to my 'BU'/SU) i read that 1 in 200 women run the

risk of it - now that your septum's gone i'd say your chances to

develop that are the same as for other women with normal uteri -

i don;t know though if there are other factors that could put you at

a higher risk for that - i do have a clotting issue (MTHFR

homozygosity) and as of today i don;t know if my pl. ab. was related

to the SU or this clotting disorder

if i ever get pg again i'll be on blood thinners and hopefully that

will take care of my risk for that ....... i've been on baby aspirin

for a year now as recommended by my RE - maybe you can ask your dr

about it too - although chances are that if you don;t have a known

clotting issue they won;t put you on aspirin either - i think ....

did i answer your questions? i hope so - sorry if it takes so long

of an explanation .....

gabi

[Guest guest]

Gabi,

Thank you so much, yes you defiantly answered my question! (again, always

soooo helpful). One more question though. how long after the SHG did you

have to wait before you could ttc?

Nickey

[Guest guest]

the SHG was so simple that i didn't have to postpone our TTC efforts -

i don;t remember though in which part of my cycle i had it - i'd say

maybe you should have it before ovulation so if there's a chance or

being pg the SHG doesn't mess up with it ..... it's safer to ask your

dr about it i guess

good luck!

gabi

[Guest guest]

Just butting in.... I'm pretty sure the SHG is scheduled for about days 7 just

like the HSG I had to call on cycle day 1 and my appt was on day 8.

Gabi gabi151@...> wrote:

the SHG was so simple that i didn't have to postpone our TTC efforts -

i don;t remember though in which part of my cycle i had it - i'd say

maybe you should have it before ovulation so if there's a chance or

being pg the SHG doesn't mess up with it ..... it's safer to ask your

dr about it i guess

good luck!

gabi

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[Guest guest]

Welcome to the group. Well I'm not a neurologist more a nerdologist

but I know the following:

They used a PET scan to rule out parkinsonism on me.

The symptoms you laid out could be:

ALS

PLS - only it's more a loss of fine motor skills in hands than weakness

Stiffman's syndrome - ruled out by blood test - r/o by blood test

Leukodystrophy - there are several and many are inherited - most ruled

out by blood test

Kennedy's - a male inherited disorder - r/o by blood test

Mutiple System Atrophy-cerebellar presentation...only speculated until

autospy but as it progresses you lose the ability to think

Late stage Lyme's disease - special lab test

Serological negative late stage syphillus - special lab test

and there is a L-dopa resistant parkinsonism (different from

Parkinson's Disease)

Do I dare mention hyoxpic brain injury due to poisoning - there is a

great debate as to thether this is progressive or not

Have you requested your medical records? If not I highly recommend

it. That was you can see exactly what tests they ran and deduct what

was ruled out. My neurological records alone are 3 inches high and I'm

still trying to figure out what an anti-Hu from 2000 ruled out.

Hey other members help me out here Does Hereditary Spastic Paraplegia

have fasciculations and breathlessness?

The docs focus on the diseases which are more common first until proven

otherwise.

Sorry if I caused more confusion than clarity. I have to say Space is

not the only uncharted world. We still are making daily discoveries

about our brain and nervous system.

Again not a doc just a nerd

Eva

>

> I was dx with parkinsons 3 yrs ago but now doubt the dx. No response

to

> any drug, incl. L Dopa. No tremor. crippling stiffness in legs. left

> leg drag. cramping in feet(dx plantar fasciitis, for 18 mnths)

chronic

> fatigue, breathlessness, weakness in hands, fasciculations, numbness

in

> knees, balance probs (walk like i'm drunk) MRI scan was 'normal'-does

> that just exclude other things like ms?

> Please help. Does this sound like pls?

>

> .

>

[Guest guest]

, Have you had an EMG yet, this was one of the first tests my

neurologist give be besides a blood test. Then of course many others to

eliminate

everything else in the world!

I don't think I've hear anyone talk about numbness in the knees thou. The

chronic fatigue, leg cramps and fasciculation's all happen in the early years

but for the most part have gone away. They can reappear when I've over done

during the day. Balance has always been an issue that along with my voice

was the first signs that something was wrong. Balance is my worst enemy its

like I'm always falling backwards...........Like others have said get an EMG

done , mine showed some abnormality but I haven't had one since

1997............Flora/Florida

[Guest guest]

,

PLS is a diagnosis of exclusion most of the time. Sounds like you have had

every diagnosis except Stiffman's Syndrome, MS, and Conversion Disorder

(this one is a psychiatric one that I was given the first time I was seen.).

I have had many of the symptoms you describe, especially in the legs, feet

and balance. If you haven't had an EMG yet, I would suggest getting one.

This was the method used to diagnose my PLS after the many other tests I

had, several of them repeated.

Yes, it does sound like PLS. You might want to see another neurologist. I

don't know where you live, but others on the list have seen neuros and we

can recommend someone for you to see once we know where you are.

One last thing: Have you ever been checked for Lymes' disease? This may be a

possibility.

Mike Gray

new to this group

>I was dx with parkinsons 3 yrs ago but now doubt the dx. No response to

> any drug, incl. L Dopa. No tremor. crippling stiffness in legs. left

> leg drag. cramping in feet(dx plantar fasciitis, for 18 mnths) chronic

> fatigue, breathlessness, weakness in hands, fasciculations, numbness in

> knees, balance probs (walk like i'm drunk) MRI scan was 'normal'-does

> that just exclude other things like ms?

> Please help. Does this sound like pls?

>

> .

>

>

>

>

>

>

>

[Guest guest]

>

> I was dx with parkinsons 3 yrs ago but now doubt the dx. No response

to

> any drug, incl. L Dopa. No tremor. crippling stiffness in legs. left

> leg drag. cramping in feet(dx plantar fasciitis, for 18 mnths)

chronic

> fatigue, breathlessness, weakness in hands, fasciculations, numbness

in

> knees, balance probs (walk like i'm drunk) MRI scan was 'normal'-

does

> that just exclude other things like ms?

> Please help. Does this sound like pls?

>

> .

>Hi , I am new to this too. My symptoms started 3 years ago

also. The first neurologist gave me Parkinson pills for 3 months,

when there was no change, he sent me to the ALS/PLS clinic. I agree

with the others that you need an electromyogram. I am having my 4th

in June................ruby from vancouver

[Guest guest]

An EMG is important . Also a spinal tap. Connie