New to the board
 

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

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.:hug:


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

Melody

so sorry
 

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

Thanks for replying Melody and Billye
 

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

Julieanne
 

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,

Emg
 

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.

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

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.

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.

Hi Julie
 

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.

Sounds like you've found a good doctor there. One thing you should not worry about is ALS. It looks completely different from neuropathy. And another reassuring thing is that neuropathy will not kill you. It may hurt like hell, but it won't kill you, and will not likely totally disable you. Most people here are able to get some control of their symptoms, and many have found a cause which, when treated, lead to total improvement. Some of us have idiopathic pn, no known cause, and for us, many have just kind of stayed at the same level, a little worse or a little better over the years.

Please don't be afraid of pursuing a diagnosis. Your doctors might be able to treat you.

Are you getting medicaid now? Do you have any insurance now?

I am lucky that my husband is supportive, but then he is a teaching biologist with a good understanding of the immune system and its mysteries. I am sorry that some others are not as sensitive to your health problems as they should be. I just think that sometimes it is too painful or frightening for them to have to deal with.

You can come here and be guaranteed that we will understand your concerns and fears. This is a very supportive group of people, many of whom have a lot of helpful information that may give you some direction.

When physicians are unable to find a reason for the suffering/symptoms people report to them, it is upsetting to me when patients are told there is nothing wrong. This sure doesn't help the person find answers or relief, when they are experiencing severe pain or frightening neurological symptoms...

We are raised to look up to our medical caretakers, nearly as godlike fixer-uppers. Their word has always been the "last word" and we look up to them for help, when we cannot fix ourselves. Sometimes, these people should have to experience being a patient under these circumstances...

Cathie

By the way, you mentioned a lack of funds for your medical care.

Recently, I had to have surgery. When I was back for a followup, I mentioned to my surgeon that my friend's husband had a serious hernia, which protruded about 6 inches from the abdomen. He had lost his job, and thus his health insurance and I asked if the doctor could offer any suggestions...

I was really thrilled that he was kind enough to offer his services at Medicare pricing, due to the circumstances. This made a huge difference in the family's ability to pay for surgery.

I am not sure that all doctors are so generous, but perhaps it would not hurt to ask, at least for some direction, if they are unable to offer help.

Cathie

Cathie:

Your doctor sounds like what doctors are supposed to be. How fortunate for you that you have this kind, compassionate and caring physician in your life.

Alan's been lucky in that respect also.

Sometimes you have to swim through a river of eels before you finally find the beautiful dolphin you've been searching for.

It's nice to hear about these kind of doctors.

Melody

Sorry I have not posted legs quit working in bed last 2 days
 

Hi you guys! Sorry I have not been on my legs gave out Sunday Late afternoon or evening! It is so excaserbating they work then they don't just complete weakness and rubber. But guess what my husband was there shortly after it happened,he saw the devastation in my eyes and he put me to bed! Did I mention that we also have our baby grandson? He is a beautiful 13 month old boy!! His mother decided she could not provide for him and she left him with with us in our home. It is a very sad situation also but is another subject altogether. Well all of you guys have good suggestions and before I posted this morning I talked with my husband and explained what I needed from him. He said he would try harder to be supportive!! I am fighting for social security disability. I have an attorney and we just went to a hearing before a judge in Sep. The judge wanted more updating on where I am at in my Illnesses and so he is waiting for test results before he gives us his decision. I did try to get state medicaid but they don't give it to people unless you are pregnant or as supplement to medicare. I also have 2 sisters and 1 brother. I have a sister who came here to Montana to take care of my mom because I no longer could do it. She is getting ready to go back to Colorado at the end of this month. My other sister just took my mom back to Oregon so as to be there when she passes. My mom wants to pass on in her home town and there is most of her family there. I was extremely close with my mother before her stroke and it was really hard for me when she did not know who I was afterwards! I have learned to accept that though and it was kind of like I lost her when the stroke happened. It has prepared me in a way to say goodbye to her and we will really be together again in heaven! I don't know if that makes sense to you guys. I have a hard time wording things sinse my illness! Things come out kinda backwards when I write or try to explain things now. Well getting back to siblings, I also have a brother in Oregon but we are not close unfortunately.

Melody, I agree that stress does do horrible things to us. I know when I am under alot of it it makes my illnesses much worse. The spasms that I have seem much worse and the pain! I also agree that the medications would just put off having to deal with the reality of things also.

Daniella, we are trying to get some remodeling done on our home so we can sell it. We realize having a multi level home does not work for me with my mobility problems. I have literally been stuck up in my bedroom for long periods because I can't get down the stairs safely. Plus we have equity in our home and that is the best place to get some funding for doctors and test. It is just getting the house ready to sell if you know what I mean?

Dakota, you are so lucky also to have a supportive husband because men do think differently then us! It comes natural to women to be caretakers but for them we do have to do alot of communicating to help them understand what we need.

Aussie, I feel so badly for you! To have to go through what you are going through and to do it alone is very sad!! I can understand though because I have gone it alone myself. Maybe if you also sat him down and told him what you need.Do you think that maybe he would listen?

Lizajane, I saw this same Neuro I am seeing now like 3 years ago. The first time I saw him he did not take me seriously! It was this time after so much time had passed that he listened. I think it was seeing how much I had gone down hill since then. Also when he did the Neuro exam and asked me to do the foot to toe exam I almost fell over trying to do it. Also the test where you close your eyes, the doctor had to catch me because I did fall over! It is sad that you have to deteriorate like that sometimes before they will listen!!
I am really happy though that he is taking it seriously this time around!

Dan, I will have to check into the medicare billing deal. That is a really good idea! I think if it is a really good doctor that some would be willing to do that.

Julie

Hi. I'm glad you have some things in the work and you talked to your husband. I know for me after I was in bed basically for 4 months my legs were like jello and very painful. I had a hard time walking to the bathroom. I have gradually builded and though I have a lot of pain now can take a 20 minute walk. Its been many months and for me and not saying you but walking through crying pain. Make sure to follow the advice of your doc though. I know for me because the pain was so bad I tried to stay off of it but I guess in my case made things worse. I had to try and this is still a process to trust what they were telling me and push through the horrible pain. I was wondering and I know you said your not close with your siblings but if you still could ask them? I'm sorry about your grandchild and that is quite a thing for you to do to take her in. I can't imagine with your pain and finances. Can anyone help with that? Where do you live out of curiosity cause maybe someone here could have a referal for you. Hang in there

We live at the far northwest corner of Montana about 15 miles from the border of Idaho. SandPoint Idaho is bout 45 min. away. We have contacted social services and they will help with medical and food assistance but that is about it. It is sad because my son recently had to put in a restraing order against the mother! She is suicidal and needs counseling but has refused to get help. It also is hard because my son just turned 18 and is trying to get his life straightened out, he just got a full time job is trying to learn how to be a father, and they are both just so young!! I know what you mean about pushing yourself with the pain, but for me my legs quit and if I dont get off them I fall down. I cried the other night and told my husband that maybe it is time for a walker!! For me that is really a hard decision because I have felt that if I did that somehow that meant I was giving in or giving up somehow!!
Sorry that it takes me so long to post I am slow slow slow!!

Hi there.

Re your beautiful grandson. This will either add stress to your day, or make it so peaceful. Grandchildren (at least I see this with all of my friends), well, it makes them a completely different human beings. My friend had a lot of trouble with her daughter. She's 27, living yet again with a different guy, and just gave birth. Well, you would think the sun has come up over the rainbow. I met my friend in the supermarket and she said "I have the baby with me this week". I thought to myself 'How can a person give up a baby for the week".?? But it seems that things today are completely different than 40 years ago.

My friend told her daughter "I'm not having the baby on Thanksgiving or Christmas so I want him for this week". The girl said "no problem" handed over the baby and my friend is in joyous moods like I've never seen. I peeked in and there was the most adorable 4 month old little boy smiling up at me. It really does make you feel better, babies, and gooing, and cooing, and just acting stupid around them. It would drop my blood pressure (and I don't even have high blood pressure). What I mean to say is, this (taking care of your grandchild), will either give you joy or and I say this with caution, because I have no idea what your situation is with the mother, it might give you more stress.

This also happened to another friend of mine. Her own daughter told her to care for the baby, promising her never to take the baby away. Well, she had the little girl for 3 years. and everybody went nuts over the kid. The grandmother never filed for guardianship (an important step to be thinking about sometimes). She figured that her daughter was in no position to be making demands so she felt safe. Well, there was no more safe.

The girl came back, took the baby and the grandmother almost lost her sanity. She should have filed for emergency guardianship. See, people don't think ahead, they think in the moment.

So I have no idea what your situation is. It might be temporary. Your grandchild is so lucky to have you in his life. And your 18 year is growing up. At least he's trying. That's good.

Like I said, this new little person in your life can give you hugs and kisses and bring down your blood pressure. Let's hope you feel well enough to put something pretty on, put the baby in a stroller and go for a walk.

The baby will smile and you'll feel better. Babies tend to do that.

So enjoy your grandchild. I wish I had one, believe me.

Melody

Hi, Its ok never feel rushed to reply. We all have are up and down days so we understand. As for the walker I think you need to discuss with the new doc what fits your needs. There may be alternative or the treatment may help you be stronger. I'm sorry about your family and really hope others will come to help you. Stay strong as you can and take care of you.

Re: the walker
 

Julie Anne,
I recently had a fractured sacrum and spent several weeks in the hospital. My last week was spent in the rehab part of the hospital and the first thing they brought me was a walker. The nurse said "meet your new best friend". I sat and cried. But it truly turned out to be one of the best things that happened to me. I was able to walk and get strong again. I have Rheumatoid Arthritis and have been able to get a walker with the 4 rolling wheels and a seat. It is truly one of my best friends. After I rehabbed I still place it beside my bed and when I wake up in the middle of the night to go to the bathroom, sometimes my feet and legs won't work but the walker is right there and gets me moving after a few steps. And if I have a long distance to walk from the car to the doctor's or lab area, the walker is wonderful. It is just so much easier to do it and so much safer. It also saves wear and tear on the body because you are moving smoother. I bought my rollator from Dr. Leonard's catalog. You can find it on line too. Here's a link to the rollator: http://support-mobility.drleonards.c...tors/28005.cfm If you can find one with larger wheels it will roll over carpet. They used to have one with larger wheels but I don't see it now.

Don't consider it a defeat. Consider it a way to get on your feet and maybe moving safer and easier.

Billye

Walker
 

Hi Julianne,

Totally agree with Silverlady and others - do whatever it takes to keep you safe and more mobile.... I too have a "rolling walker" that has brakes, a seat, and on really bad days is a huge help. I also use a cane when needed - and a wheelchair when I got out to docs for a period of time because its better to be able to move around then take a header (I've had my share)... My insurance paid 80% of the walker and a rep was sent to the house to fit it to me to be sure to get the right one - will your insurance pay part? Also, if you do get one with a seat - I'd try to get one with a strap across the back to keep you from flipping off the back if you do sit on it....

Hang in there...