[julieanne43]

Hi i am new to the board and am looking for info and support. I am so confused and scared! I was diagnosed in 1993 with Fibromyalgia and was devastated by the illness for about 3 years. I learned ways to deal with it and took meds and adapted to a new way of life. I would have times of the year where I would be in bed, but for the most part I went on with my life.
Then in 2003 my life changed and now I have no normalcy and the future is so uncertain! In 2003 I started having temporary blindness in my right eye but my vision would come back. Then when I would be walking in a straight line it would feel like i was falling over. Then from there I had dizziness,pins and needles,electrical shocks,numbness that would move to different parts of my body,burning sensations,feeling like I was sitting sideways in bed or falling over,double vision,flashes of light in my eyes. I had ct scan to rule out stroke right from the start. I then was passed from doctor to doctor because I have no insurance. Each Dr. felt I had all the symptoms of M.S.. I had MRI with and without contrast it was negative. They did MRI of my spine without contrast and it was clear. The only thing they found was a small cyst in the right temporal lobe of my brain. The only bad thing was if it becomes larger they would not be able to remove it because of where it is. I was referred to a Neuro and he did Evoked Potentials and they were negative. I had a Nerve Conduction study and it showed slowed down response and he diagnosed Neuropathy. I have had MRI's once a year to monitor the cyst but nothing else has shown. In the mean time I have all the symptoms I had at the start and some new ones like falling over if my eyes are closed while standing, swollen lymph Nodes from my left shoulder down to my elbow, cramping sensations in my arms and legs, weakness in my legs and my arms,slurred speech, wake up and i have lost use of my feet, and my arms, my hand one morning was dangeling from the wrist with no sensation or use. I have spasms all over even around my eyes. I have been unable to get allot of the testing done because of a lack of funds, no insurance, and we have a combined family of 6 kids. We recently scraped and saved enough for me to go back to the Neuro. I went and he listened to my list of symptoms and then examined me. He said right off the bat that I have PolyNeuropathy but that he felt it was secondary to an Immune System Disease. He then said he wanted to do an EMG to see what diseases would fit the damage shown on the test, and then he said he would send me to a Rheumatologist to track down what disease is causing it. I am so scared because I know it is something bad!! I know allot of damage has been done and I am petrified it is something like ALS. I cant talk to my husband because everytime I try he jokes about it, I just feel alone in this whole thing! I worry what will happen to my kids? I dont think my husband could take care of me and the kids and I dont want to burden them. I feel allot of guilt because I cant take care of them and they dont have me to lean on! Well I think I have loaded you guys down with information overdrive so I will close now! Any info you guys have would be greatly appreciated
Thanks Julie

[MelodyL]

Oh my dear Julie:

What stuff you have had on your shoulders, you poor thing. And your husband really shouldn't laugh at you. It sounds like nervous laughter because he just might be as afraid as you. Lots of kids to worry about also. Do you have parents?? Can they help out in these troubled times you are going though??

This is a very friendly board and someone will come along and give you some good advice. I just wanted to welcome you, say hi and give you a hug.


Take care, and keep reading. Someone will post after me.

Melody

[Silverlady]

Julie,
First, welcome to our board. I'm just so sorry you have had to go thru all of this. This is the week-end and the board is slow. Please do not give up hope, there will be people with more knowledge than I have coming along.

Billye

[julieanne43]

I do have parents alive but my mother had a stroke in 1997 and disabled and she is dying, and my dad is in California working.You are probably right about my husband and he probably just does not know what to say. I just wanted to thank you for writing back!
Julie

[BEGLET]

So sorry to hear what you are going thru - sounds like your doctor is concerned and doing the right tests so far - try to hang in there and not worry too much - are you scheduled for the EMG yet? As far as techincial info - I'm not one our "experts" in that area - I'm sure they will pipe up... but as far as reaching out - do as much as you need too here...

Very often family and freinds have absolutely no idea how to react when a person close to them is ill - so wont talk about it - thats what we are for....

As far as feeling you are letting your kids down - it sounds like you are doing what you need to in order to find out whats going on and get healthy - and that is helping them...

Just sending good thoughts and keep up updated on your tests, etc....

Take care,

[julieanne43]

They originally scheduled it for the beginning of Nov but then rescheduled for the middle of Nov.I will be seeing the doc the same day so he can give me the results.

[MelodyL]

Julie:

A lot of your problems are being made worse by the stress you are enduring. Think of it, your mom had a stroke and you just posted that she is dying. You have 6 children. My god, if that is not stressful, I don't know what is.

Is there a miracle solution for you?? No. Would a bunch of xanax help you out??? Not at all. Might be a quick fix, but honestly, in the long run, meds (this does not apply to pain management by the way), but anti-anxiety stuff that people take just to cope. In the long run, they don't learn to cope, they just learn to self medicate.

I really believe that your body is telling you "take a breather, relax, slow down".

Can you do this (given the circumstances you are enduring right now)? Well, I don't know. That is what support systems are for. That is what deep breathing exercises are for. Our brains control our bodies and if we are full of tension, we can't move our necks, our legs spasm, our whole body is out of whack. Sounds like your body is really out of whack. Not that you don't actually have medical problems, of course you do. But right now, they can't be fixed because of all the stuff going on in your life.

You say your dad is living in California. He obviously can't help you right now, am I correct?? And what you are dealing with with your mom, well, I went through this 12 years ago with both parents. One died in January of 1995, the other died Christmas Eve in 1995. My son went through a glass window and had to have 75 stitches in his face. this was in 1995. I developed Bells Palsy ....yup, in 1995. 1995 was probably the worse year of my life.

I also had bladder spasms like you would not believe. No wonder I had spasms. My life was literally falling apart. I was flying back and forth from New York to Florida, to visit both parents and take care of their funerals. (by myself by the way). I had to arrange a memorial for my mother. I had to arrange all the people in the nursing home in wheelchairs to come into the big room and I took my parent's wedding album, propped it up on a table, put a big bouquet of flowers (like a memorial table). We had really no other family except her two sisters. That was the whole of the family that was represented at this memorial. Everybody else there were the residents of the nursing home. But I arranged it like everybody was there to pay their respects. Then I tried to contact a Catholic priest but he would not come. So I paid a Baptist Minister to come and conduct the memorial service.

So I did what I had to do, then I said goodbye to my father. He was the one who lived about 11 more months and died on Christmas day. In 1995.

So talk about Stress. I developed Bells Palsy in April of 1995.

Stress impacts our whole body. Makes us feel pain much more than we would normally feel it. Our muscles tighten up. Everything is not in sync.

This is what I would do. And I only suggest it because you really need someone on your side here (while you are going to all your appointments, etc.).

You have not mentioned any brothers or sisters, so I gather you are an only chld??? So it's just you, your hubby and your 6 kids, right??

I would immediately sit down with your husband and gently explain what is happening to your body. If he starts to laugh, or say something inappropriate (probably because he just doesn't understand what you are going through), you MAKE him understand. You explain "Listen, this is serious, this is what I[m going through right now, we are all a part of this family, we all have to deal with this. My mom is dying. I need your help. I need your support"

Now this will either work, or it won't. Can't do a darn thing about it if it doesn't work. But you have to take this chance. I don't know a darn thing about your marriage. But from what you stated, your health is hitting a low point and you need some immediate help here and it must start with your husband's involvement.

Try and get a few minutes (I know, it's hard with 6 kids). Perhaps when they are all done for the night and put to bed and you have some down time with hubbie. State your case, calmly, and clearly. Some men need to be made aware of what women go through. They just don't get it.

You need him now more than you have ever needed him.

Give it a try.

I'm rooting for you.

Melody

[daniella]

Hi. Welcome to the boards and I'm sorry your going through so much. This is a great support board and it is so important to have a support system. I really encourage you to talk to your husband and tell him how he can help you emotionally and how your feeling. Is there other supports too in your life? I know for me my mom has been my strength and without it I don't think I would be here. Anyhow is there a way you can take out a loan,disability insurance? I'm very new to this so I'm not as educated but maybe you can keep calling the doc to see if any early cancels. I know how scary this I live in fear and have been dealing with this for about 9 months. I agree that stress,anxiety,depression though very hard to get through make things worse. I have been working on my mindfullness and trying to stay in the day. Not so great right with that but I do think I have made progress.Sending hugs and your not alone.

[Dakota]

I agree with the others about having a frank talk with your husband. My husband loves me and would do anything for me, but I am constantly amazed that he needs to be told every little thing in detail He is unable to untuit anything. I used to think he was unsupportive, but now I know that his brain is just wired differently than mine. I have to tell him everything directly and tell him exactly what I need. Then he is very supportive.

[Aussie99]

My husband does not believe I have neuropathy because some tests have come back clear.

He thinks I have imagined all of this suffering.

I think he is in denial,but I also think he avoids my health issues because he is just as confused and probably as terrified as me at times. So we both just pretend everthing is ok, even when it's not. He is aware I was very ill with something, but the neuro told him that they couldn't find anything wrong with me. So I think he ponders back and forth between disbelief and avoidance.

I don't recommend this.

Welcome to the forum. I am sure you will find the support you need here.