SOO... SORRY

[tamhart9]

Hello everyone and I just wanted to say I am so sorry I havent been very active on here lately. I have really been struggling with pain and just trying to cope... I sometimes can help but wonder if I got the right diagnosis but I guess I just have to keep trying and doing as asked... I guess that is what this is all about.. and of course with the little ones it makes it even harder.

[tamhart9]

Thanks finally someone who is seeing it my way... I have been saying this over and over again but couldnt believe it... it was actually the optic neuro and stupid neuro that came up with this diagnosis. my pcp just followed their line... i was so happy to hear it wasnt ms that i thought i would give it a try and change but now i am beginning to wonder what i have done to myself in addition to the old symptoms all these new side effects from the diamox as came forward and they tell me it is normal. they did say if the diamox didnt work then they could put a shunt in to drain fluid but that is the last resort i dont know i just know that it is definitely unbearable for me and it makes me miserable on top of everything else.

[Quixotic1]

I can't believe they told you that pseudotumor cerebri is untreatable.  There are many treatments for it, of which, Diamox is just the first!!!!!!!!!  I was put on Diamox once and could not tolerate the bizarre way it made me feel.

I believe you should see a 2nd opinion neuro and also get an opinion from a neurosurgeon.  I have never heard of PC causing the symptoms you had, though you did have very elevated LP pressures.

I don't think you have gotten the whole story yet.  Please seek some other opinions!!!  Please?

Quix

[tamhart9]

Well I am going to try to answer everyone in one post pls bear with me... No I have never has any evoked potential testing. And its a wonder that you even ask about the headaches that has never been a symptom that I have had and still have no headaches which is one reason i am concerned. I only seen one neuro other than my special optic neuro and that first neuro was at the weiner roast... I am currently taking diamox because that is suppose to release fluid from the spinal cord which is extremely elevated in my situation. This medicine is a nightmare but everyone says its normal. When asked why not MS I was told because I was overweight do you remember now rena???

My daughter has been just great!! We still have our little coffee breaks (as she calls them) although I dont drink coffee. I have disscovered that the ice coffee isnt bad though.. I guess we all find humor in something and mine is "ice coffee" My daughter's biggest question this pass break was that she could see that I am getting weaker and she asked if I was giving up and I told her absolutely not. I can never do that all I want is simple answers and some day I will get them. Her junior prom is coming up and she wants to go prom dress shopping but she said she would understand if I couldnt go with her. I told her I wouldnt miss it for anything just to name the day... I love it when she has such an open mind and every day still seems to try to understand why it is hard for me to move around and be the mom that I use to be... One good thing is we moved to an all one floor place so that is better for me but even to grocery shop is a task for me any more and I think she sees this I really do. It makes me cry to think that I have done something to deserve this although I know I havent done a thing wrong but I feel like I am being punished some times. But anyways I am just going to keep climbing higher and reaching for the stars. I think that is the highest I can go.. and until then I will continue to be the best mom I can be. The little ones are 27 months and 14 months now and we have had them for almost 3 months they have came so far but still have a far way to go...

[Rena705]

Hi Honey!  It sounds as though you are having a tough time of it eh?  If I remember correctly your MRI was inconclusive so your Neuro did an LP right?  I don't remember the results of the LP...can you remind me?

Did this Neuro do any of the Evoked Potential testing?  I am wondering because this is the testing they usually do as a last step in the hunt for an MS diagnosis.

I am so sorry that you are feeling so uncomfortable honey!  Have you had any of those "horrible" headaches yet that they spoke about with this tumor?  Did the doctor explain to you why exactly he is ruling out MS COMPLETELY?  I think that if you were to ask him to explain why he DOESN'T think you have MS because you are still concerned with the symptoms that you are having, he may be able to explain in clear, concise words as to why he has decided that MS is not a factor in your pain.

Just have to ask though, how are things going with your daughter?  Good I hope and I hope that she is helping you through this as best she can!  I hope you start to feel some relief soon honey...all of us know what pain is but our individual pain is so hard to share!

Lots of Hugs,

Rena

[mae1]

I dont think a second oppinion ever hurt anyone, maby something to consider...
please keep us posted and i hope your day is not to bad today...
april

[spastic]

  What are the medications you are on?

[tamhart9]

no i havent because i was hoping this doctor was right so i thought i would give him the benefit of doubt. but now who knows

[mae1]

Im sorry to here about all your trouble.....
Im just wondering if you have recieved a second oppion on your DX.
april

[tamhart9]

The symptoms are still the same... weakness on right side, pain is horrible in back and legs my legs will lock up. It seems like every muscle in my body is just crampy up and tightening which in return causes pain of course. The diagnosis is predumotumor cerebri which is a lookalike of ms... i just thought that the pain would get easier but it just seems like it is getting harder. This medicines they put me on is causing a lot of tingling in my arms, legs and feet and that is so unbearable. I have talked to doctor and he says its very normal. Just to be patient but wow patient isnt exactly easy with this pain. thanks for listening though

[spastic]

Hey girl, lean on us for support, thats why were here. Im sorry your having a lot of pain, it sure makes everything unbearable.  I'm sending some big cyber bear hugs to you. We are all here for you.

With Love,

Spastic Ada

[Heather3418]

Hey girlfriend, we've missed you.  What makes you think you may have gotten a wrong diagnosis?  What's going on?  What do you think is causing your pain and what kind of pain are you experiencing.?  Tammy says, "Oh lord, Heather, so many questions."

I just want to get a feel about what you arre going through.  You know that you will get the full support of the Forum, no matter what you are going through.  Let us help Tammy.  That's what we are here for.  

It it's pain and big time pain, you and I can relate.  So let's talk.  Tell me what's going on.  Please share!

Big HUGS, but gentle hugs...don't want to hurt you any more than you are already huring.  I care Tammy.  WE all do...

Much Love,
Heather  

[Super_sally888]

Hi Tam,

sorry you are having such a hard time.  Sorry, I can't remember your diagnosis.  Was it MS?

You are welcome to come here and express what's going on, ask for advice, etc.  any time.  There's a lot of very experienced people on this board.

I guess with your condition its about pacing yourself to do the urgent things, and living with the rest of it.

How old are your littlies?

Sally