I need Help ! MS Friends ! Crazy SX are back,The more I look at your story's the more I wonder !

[mommies4]

HI Everyone,I've been off for awhile.To start I ON Pain from what they have DX'ed me with ( IIH ) or BIH,Pseudotumor,acetozolamide only worked for me for 5 mths and doc installed a LP Shunt,I had the pain behind the eye bad,vision weakness,blurred,I'm 5 mths in on the LP shunt,still dealing with the migrains,bad.

A mth ago I finally started seeing a Neurolodist,i have a GP,Neuro.Surgoen,and a great Opthomologist !
However even from the start my opening pressure was only ever like 5 with a spinal tap ??? they did all the scans and test and said it was,BIH,

I just started what I call yet another Flare only ever ok to good for 3 to 5 mths and every thing comes back,
now this is been going on for ( mild to hardly ) 20 years )10 years ago it got bad in my legs felt like I cold not walk,no balance,cronic fatigue bad,rest. leg syndrom,my legs hurt for long periods of time.

I saw a ENT for a few years ,I was always ill feeling,ofcourse the headaches...It finally subsided almost gone but not really.This FEB.is now 3 years of the most horrible times of my life,I'm 38this yr.My SX now are more then ever before they started 3 years ago,very random but can last for mouths,The Fatigue is so bad i can almost fall asleep standing up.

In the middle of the day ! RLS,Cronic pain is back in,in my legs and arms I also get really bad pain in my stomach,It all kinda feels like deep tendons ripping tearing or like a rubber band being pulled tight,behind my knees is horrible,more on my left side,that side seems to have been affected the most weakness like I have had a stroke but no stroke,4 mths PT 1 1/2 yrs ago for that.I get pain in my chest alot.Funny because its my right side behind that eye

that i get this dreadful,horrible pain feels like someone is trying to push my eye out from the inside,I went 11 mths before a hospital gave me the  BIH DX,then surgery.I'm getting the little electric waves in the left side of my face,SX are all coming on very fast ! I have muscle spasms all over really bad,I'm going to stop here


,I need some input on others and the type of pain they may feel.. I know every one IS SO different,I just need more,I go back to the Neurologist taking him all my reports from the last 2 + yrs not to mention I have WHITE Matter Dieseas,My med list right now is for the migrainesand pain ,,Butal-ASA-Caff, Hydromorphone 2mg every 4 hrs,for (spasms 3x a day Methocarbomol 750 mg),,xanax 1mg 3x a day,for my head,,Divalproex sod dr 250 mg 3x a day,

Acetazolamide,250 mg,I can take this 2x a day it is for the fliud build up on my brain my shunt is set at 100,we tried to lower it to 90 didntwork i got low pressure headaches and you dont want them almost as bad as the HIGH pressure headaches,they are the most pain I've ever felt in my life,I had 4 kids natural,ill do that any day ... lol


Sorry everyone to put so much on I've so long with unanswered ?'s My memory and spelling is not so sharp any more so excuse me And I Thank all of you in advance !!!! xxx mommies4

[mommies4]

Thank yo all for your support and words of encouragement,Everything and everyone relly does help,It's unfortunate,in the US you have to fight for and look hard to find a Doctor with

common since,let alone the education to actually treat you.It may take awhile but I wont stop ,, I need answers,farworst I need Help ! This all has just somewhat taking over my life,and I want it back.I'm strong when I need to be,and hide when I'm beaten,but always come out head up for the next round..

    Big xxxxx to     be well   and Thank You ! xxxxx angie

[SarahL2491]

We send our encouragement!  Oh, I think we equally have some strange, detached neuros here in the states as well
hugs to you
yet again another Sarah

[Sparkysarah]

Geez .have had one hell of a hard time girl and this had been for a long, long time. I cannot answer any of your questions but can just offer you empathy, support and understanding.

Some of these doctors/neuros drive one mad but there are some really good ones out there too and I have een very lucky in the UK to find some excellent ones. It just seems to be luck of the draw.

Keep us posted how you are doing and we are here for you.

With love from, another Sarah  xxxx

[drsdonthelp]

Hi Angie,

I hope someone can help  you with these questions. I have never had any type of nose sore problems except for a recent sinus surgery, but lol, that obviously is not what you mean.

Well, as far as the B-12 is concerned, I have read that this can mimic MS, but don't quote me on that, I am probably not the person to answer this either.

I know this wonderful forum full of bright people will be glad to answer these questions for you.  :) )


Take Care,
Pam

[mommies4]

HI Pam, Yes I do know what you your saying,I want to be really mean,passive though,truely they have NO Idea,what we go through,if they did they wouldnt ? are sanity !

You know every time I post I always think of something I forgot to mention,anyways I have a ? I'm going to post hoping someone with ms can answer.Seen my Neuro-Surgon yesterday,and his nurse says that they sent out my spinal fluid

no ms was found in it,or abnormalities,So could I still have it and it not show up in the fluid ? I'll post and see what I get.This could possible throw out or keep me hanging ina since...

I also see my GP next Tue. and have to start B-12 shots She says blood shows I'm around 300..Have another ? for you,I get nose sores,they have hit me hard in the last 2 mths,I try to be very careful ,not drinking behind ppl & so on... after looking it up on many sights I see that alot of ppl with ms deal with this,a high # of ppl.just curious if this is something you deal with ?    xxxx  angie

[drsdonthelp]

There is alot of your post that I certainly can not help you with, but.. I know the feeling of going in to see a neuro and they interrupt you , roll their eyes at you, and basically make you feel crazy or hypochondriac.... It was my 3rd neuro I had gone to see and I wanted to kick him where the sun dont shine during  the reflex test (I have hyperreflexia).

Sometimes they are ssoooooo arrogant, you want to ... you know..... be MEAN!! lol

Pam

[mommies4]

Hi Ladies,
Pam trust me ,, no bore here ! alot of ppl that come to forums are looking for SX to compare to,or help them understand more,I do know what you mean,I often feel drunk and tend to fall to the right... LoL...

Shell,I seen the Neuro Weds.3/2, He didnt even give me the time of day,I was very disappionted,He didnt look at any of my reports,walked in late,as I was waiting I had to the hospital to fax the reports,seen jennie the office girl put them in my chart,he grabbed my chart opened the door called me back,asked if the meds where working,I said kinda,I still have ?'s and as I tried to go into what drives my pain he interrupted me over and over...

I wanted to put my elbow through his front teeth ! As he said you have no Neurologic SX,
I said OOOKKKKK so wanna explain what I've been going through then ?Cronic body pain for 3 years,pain for 10 years,started 17 years ago,He says some people dont handle surgery well,I said maybe not however Surgery was 5 mths ago this started long before

I got really frustrated and shut up , agian befor I used my elbow!

He then pretty much pushed me out the door ! So I don't think I'll be seeing him in three mths like he had planned...

OK ,,I'm curious ??? I;ll try to make this short and explain the best way I can...

I said stomach pain,- along side of the vaginal canal on both sides,not the actually canal itself,from just after the openning upward just above the pelvic bone,is that dreadful pain it's back,has been for about 4 days now,all day long.I can get it to calm alittle when i take my pain med,hour later it returns,almost feels like tendon or deep muscle,a pulling feeling,it can double me over.

One week after surgery this started,it went on for a few days and stopped happened again for a few days a mth later and stopped,now 3 mths later 4 days into it and its not stopping,has any of you heard of any thing like this.

Fatigue is also kicking my butt ! If I sleep on my left side and not roll over in the morning hours my entire left side feels numb hard to move when I wake.Leg muscles are feeling very weak again.

Breathe in and out,,,  Thanks Sarah ,,,              xxx Ang..

[SarahL2491]

we are here to listen, comment, support you and darn, you have had a rough time girl!
keep us posted!

[sllowe]

Mommies!

I again! When do you go to the neuro? So we can help you narrow this down a bit before the visit.

Like Pam says, the waiting is so tough let alone what you are experiencing.
We understand.

-Shell

[drsdonthelp]

I feel for you!! It is the hardest thing to try to figure out what you are going through and take care of little ones at the same time.

I also get the slurred speech, eye pain, face pain, all over random bursts of pain with spasticity in my upper back and right upper thigh.

I have had dizziness for 8 months and twitching thumb for three months. Memory and word finding HORRIBLE, walking like a drunk, staggering and trying to find the ground is very interesting, LOL

I can go on and on, but I won't bore you, I hope you can get some answers soon.


The waiting is the worst part along with the not knowing.

Good luck,
Pam

[mommies4]

I forgot to mention, My colesterol out of the blue went bad Jan.2009,my B-12 is now right at 300 Doc wants me to start B-12 shots..  One more thing besides 4 mths of PT for a weak left side i also had a left leg cramp like a charlie horse,for about 3 mths,hospital gave me lamictal and it finally stopped,just one of many crazy sx on my list..

   On a Funny note ; My husband says hunny are you listening to me ,did you hear
me,yeah,I did ,,now what did you say....   :/ sorry really what did say ?opps I really have to work on that ...

[mommies4]

Hi Shell and thank you,  Confirmed BIh or ( pseudotumor )My csf does not drain properly anymore,Dx'ed in April,of 2010 after a 6 day stay with extrem Migraine and body pain A Neuro Opthamologist Dx'ed me.1 x a month I see him for ongoing eye evoked testing and exams.

BIH is slowly causing me to go blind I have pressure and fluid on my optic nerves,more on the right.The Pseudotumor is behind my right eye,In a manner ( a Fake brain tumor )

Thing is I don't really fit the dx I am 38 but only 120 lbs soaking wet,BIH is found primarily in larger women,said to be a good diet plan could lessen or even completely retreat this dx,

in my case not so much.5 mths in on the medication to drain the fluid it stopped working,within 4 days of that I had alot of pain and pressure,did a spinal tap,prior to surgery that night.I now have a LP Shunt,a drainage tube inserted into the spine and around into my stomach where it drains.I did leave a few things out my post last time got to be alittle long.


Pain in back - for over 17 years
Pain in stomach - I also get what feels like Electric shocks,also in hands feet and forearms
Behind the knees - it feels swollen,and hot,bad ache,feels like my are noodles my knee wants to give out.for over three years now,since my last son was born.

Eye - Behind that right eye I have a pain that hurts like nothing ive ever felt,this goes on off and on all day long depending on time of day sometimes worst then other times,morning is dreadful because ive gone all night without meds.

Electric feeling i have alot in my face my eyelids,forearms stomach,feet

I have this nagging twitch in my left thumb nov,dec, it went away and had come back,alot of my sx come back,my body has been doing this for 3 years now and each time it seems to get worst.

The migrains are part of the deaseas procces as im told we just cant get them to stop,so i take 3 pills just for the migrains.I take Hydromorphone 2mg every 4 hours or my body dont want to move,at all my muscles feel weak,very weak,more on my left side.

memory - i have no focus anymore,I could put the car keys in the fridge and look for hours befor my 6 year old pulls them out for me.no concentration,and can never remember what im doing from room to room ...

cronic Fatigue  can get to be really bad,had this for 10 years,last 3 have been really,really bad in the afternoon.

When i was dx'ed in april w/ BIH and the Dr. came in and said ,,ok re are releasing you,I said wait a minute ! What about all this pain what is going on with me you just told my family you thought i had a tumor on my pituitary gland and then no the next day and say i have BIH,cant say why im in so much pain and your gonna let me go ! What about my MRI

Dr. put a picture of my MRI up in front of the light and i asked what are the white spots all over,he said that looks to be white matter deaseas,i said so whats that,he then said it could be the start of MS,and thats all ive ever gotten,im in procces of seeing a neuro and will be taking him all my reports from april last year in hopes he can help.


Depression
vertigo
slurred speech has not happened in a while
ive had troble in the past with my throat closing ,hasent happened in a while
hips and entire left side feels numb or swollen not sure how to describe..

(ive had a bone scan) for 31/2 mths a few mths ago i had this awful pain in what felt like the very end of my tail bone so bad that i couldnt really sit, lay,or even stand without pain
and one day it was just gone,just like it came

,for the mth of dec i didnt feel to bad other then the migraine,  A week ago the tail bone pain is starting again,It seems like it all is comeing back it started feb. 2 with the pain i get in my right leg it only lasted a few days

,however i should have known better I even said to myself  ( NOT AGAIN )So slowly activity is on the move within my body,I will stop here,and see what you think.

                     Thanks Again ,, Ang...

[sllowe]

Hi there,

I'm sorry your post drifted to toward the bottom. I'm not familiar w/complications of BIH. So, what I'd like to do is ask you, has the doc described all that you will experience w/this? If so, can you list those symtoms? So we can look at them?

Also (correct me if I'm wrong) since then the neuro and surgeon are saying it's not BIH. My thoughts here are to have these 2 docs confer and provide some reasoning in that regard.

So, what we are left with in timeline fashion would be this from what you've given so far:
restless legs
- pain in back and legs and arms
- pain in stomach (feels like pulling)
- tight legs behind knees
- weakness
- eye (describe all that is still going on w/your eyes)
- electric feelings on side of face
- muscle spasms
- migraines (is this from the fluid on brain?)
- memory problems

Tests:
- MRIs (dx'd white matter disease?)
- ?? name the others

Meds:
- List here and ask docs if any of these can cause the problems you are experiencing as well.

Now don't you be sorry for the post and explanation! We want to help. Since I'm not familiar w/your existing condition, thought it would be best to break this up for you and for others to read through. Add to it, describe/fix further and we'll see how we can help! Ok?

Talk to you soon,
-Shell

[illinwithoutacause]

bump