I GOT NO Responce from the MS forum Maybe someone here can help ?!!

[mommies4]

I posted this yesterday on the MS forum and got no responce,NONE,Maybe its my wording or how much i say i dont know ! ,,,,,,,,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]

Thats the problem,I don't seem to have the tender points,when the reumy seen me in the hospital and checked this a 5 min visit,and said i had it fibro,i just kinda sratched my head,it didnt make since..

I had to reschedule my appt, due to my Ins. Again...its like a no win,win for me..because of this,I have yet another long weekend ahead of me,I'm out of the 1 med i need the most,took my last pill a few hours ago,& I'm already feeling the pressure building

I will be heading to the hospital soon they will have to release some of the pressure by doing a tap...With the shunt in place it's not so bad it now comes out from the valve that is inplace from the front of my stomach.I will return VIA hospital bed soon ... hugs to all

                                                         xxxxx mommies4

[MrsAristotle]

Good luck on the appointment.

This is a good web site about fibromyalgia:

http://www.fmnetnews.com/basics-criteria.php

If you have 11 out of 18 tender points then you have fibromyalgia. You certainly would get the pain in the chest but no lesions.

I am glad your seeing your neurologist today. It certainly sounds like an autoimmune problem is going on, but you could have some fibro as well which is very usual for people with autoimmune MS problems.

I am so sorry you have been through so much.

Will you let us know how you get on today?

Big hugs. Mariax

[mommies4]

Hi Every one and Thank you ! ( Pseudotumor ) has been anything but a normal case.1 Docs say It can happen lust unusual,im 5'3 and 120 lbs,My case has been extreme

,Doc also says what i have expirenced is part of the disease process,unfortunately,the meds are trial and err. untill we find what works.. ): It's been a rollercoaster for sure.

I was told a year and 1/2 ago that I had Fibro,however after looking it up,i often ? that,My pain don't fit what i read or have been told.

I Do believe I have an Autoimmune problem,MS or Lupus,Lupus has not shown up,I have lessions,I will be seeing the Neurologist 2 morrow and will hand over all my reports from the last 2 years.

Neurologic; Balance,memory,weakness,spasms all over stomach after surgery for 12 days I had lower pelvic pain that shot upwards with no explanation,obgyn came in they couldnt find anything,it was almost like being shocked over and over again...

I have had this pain before just not that bad a few shocks in my stomach,I have alot of pain in my right hand both forarms upper right chest I went through a 2 mth charlie hourse in my left calf prior to DX of BIH.

My pain levels stay around 4-5 daily can peak daily upwards of 8-9-10,I am still under the care of the Opthamologist,It seems I'm still losing alittle eyesight slowly i go 1 x a mth for the Field test.

I will recheck the Ms forum,thank you all for your support,Hugs to all of you mommies4

[MrsAristotle]

Hi you will have to excuse me but what were you diagnosed with, and what was the shunt for?

Oh google is my friend i just found what BIH is and the shunt was for.

Wow you have been in the wars, but it does explain the headaches and eye pain and from what I just read it can stay for awhile until it resolves itself.

Now also from what I read there is no neurological symptoms attached.

Do you think you have MS?

The pain......

Well to be honest I have terrible leg pains and back pains all the time but take no medication BUT I have a very high pain threshold.

A friend of mine who has fibromyalgia is on morphine the highest you can go......

When I am not in flare my pain is about a 5/6 but lately it is hitting a 10 and worse at night and now I have just started to take diazepam which I was prescribed for neurological pain.

I honestly think you should go back to your primary care giver and discuss all this because there is obviously something else going on.

The thing is when you have these devastating illnesses and operations it can wake up other things.....

Your symptoms could be M.E. or MS or Fibromyalgia especially with the muscles giving you problems. The pain in fibromyalgia can be horrendous.

Look I really think you need to talk to your doctor about this. The only other thing I can do is give you a big hug, I am so sorry you are going through this.xxxx

[illinwithoutacause]

dear mommies4,

i am so sorry for everything you have been going through.  i wish i had some answers or pertinent information for you, but i don't.  i am not dealing with the same level of pain you describe, but i have some of the same symptoms you describe.  left-sided weakness, as if i had a stroke, eye pain, etc.  no one has given me any answers nor treatment plans so here i sit.

i know the MS board can be rather quiet on the weekends, and lots of people post so things get pushed off the main page fairly quickly.  perhaps you should bump your post just to get it up to the top where someone with some experience and knowledge (e.g., Quix) can give you a proper response?

blessings to you.  i hope some of these new docs can help piece something together for you.

binx

[faithhopegreatestlove]

Hi Mommies4,

Like Jibs, I wish I could say something of consequence about your meds or dx. I'm just not knowledgeable enough.

I remember when you were preparing yourself for the shunt, and thinking how incredibly brave you were. Still, I'm impressed with your incredible perseverance and strength. Are you still with the same doctor? How closely are your med's monitored and are they still trying to find answers for the symptoms that obviously have not been alleviated by the shunt.

Hang in there, my friend. May you feel the warmth of Spring rise up in your spirit to renew your body.
--faithHGL

[jibjen]

Hi,

I can not comment on any of your symptoms as I have not experienced anything you have listed or have had any meds like you...but I do see a nuerologist also which was originally for migraines but has turned into something more and i am currently seeking a dx. for more than migraine. I have been dealing with symptoms whcih are mostly sensory and recently pain but does not seem to your extreme...I am fairly a newbie to limboland and all this diagnostic journey..

BUT what I want to say to you is that I am glad you have come over here for some input..It is typically quiet during day BUT I am sure some other folks have some input for you on your current experiences...Your not alone....

I can sympathize with you that this stink which is not really what I want to say but I have to be proper here.. Again someone will come along with more experience and input..

Be well...