so upset and worried for my daughter.

[Nev23]

Hi. You may have seen my other posts, I have been dealing with pnd and anxiety, a possible break up with my OH and have been stressing about my daughters allergy issues...well now I really feel ten times worse.

I posted a thread in the health section as I was referred to a neurologist at my local hospital. I kind of suspected something was not right but in all honesty I thought everything would be fine. I have been given various tests and have been told i have a neurological condition, something is wrong with me. i have have bloodwork done to test for various diseases. They found that my hands and feet were not normal, have weak muscles and my feet had abnormal reflexes and the problem is starting in my hands. They couldn't tell me what will happen in the future but my disease will probably progress very slowly over the years.

That is fine, i can deal with that but i have been told it may very well be a genetic disease so there is a chance I have passed this on to my baby. They think it may be genetic due to the gradual progression of my symptoms and the fact that my brother has problems too.

I am beyond scared and feel guilty that I may have passed on my bad genes to my daughter...i love her more than anything and I would hate to think that she may have something that is my fault.

 

[tummymummy]

Im so sorry your having such a hard time hun, dont feel guilty about this it is not your fault. Big hugs for you and your lo xxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[PipPlus3]

So sorry you are having to deal with all this. Non of this is your fault. Remember, even if you have a genetic condition and even though you were told there is a chance that your daughter will have the same, there is a chance she won't too. Even if she does, she will have you to help her deal with it and you will have a stronger bond for it.

Keep your chin up

 

[goddess25]

So sorry your going through this. What did the neurologist diagnose you with? I have been a nurse in neuro and might be able to give some better advice.

 

[maddog37]

So sorry for all the issues you are dealing with. I can't comment on much in any useful manner.

It's best to try to keep reminding yourself that you don't know what's going on, you don't know if you passed onto your child. And until then, you need to remind yourself that it's not happening yet. You know how it is with anxiety ... your body reacts to your thoughts as if it's really happening. That won't help you. Remember one step at a time. If it comes to dealing with it, then you will and you will make it through.

 

[Nev23]

Hi guys, thanks for your kind responses. Like you say, there is no point in worrying about the unknown. I wish I could get these thoughts out of my head...im trying not to think about it...it is still so raw so im probably not dealing with it so well.

im also exhausted as my daughter has been awake every hour the last few nights so the exhaustion is not helping.

I feel like they must have got it wrong, i must be healthy..

 

[Nev23]

So sorry your going through this. What did the neurologist diagnose you with? I have been a nurse in neuro and might be able to give some better advice.[/QUOTE

. It is all a bit of a blurr. I asked him what he was testing me for and he said sum sort of hereditory spascity and ataxia .. The nurse took about half a dozen blood tests. There is other diseases they are testing me for too but that was all he told me.
My reflexes were over reactive so I have spacity in my legs and he had other abnormal findings apparently. So I guess it must be a diseass that can cause too strong reflexes and muscles that are weak. He said it is something to do with my brain / spinal cord and not a problem with a nerve, whatever that means. If these blood tests come back negative he said they will scan my brain to see if they find anything.

 

[Babyface179]

How stressful for you and I am so sorry you are having to deal with this. Keep positive and best of luck to you, it sounds like you are going through a very tough time ATM. X

 

[Nev23]

I feel so guilty still....i need to find out but I know im going to have to wait for ages to find out what is wrong for sure, if they ever find out. I may be in denial a bit as I keep thinking the neurologists must be wrong, even though in the back of my mind I knew they may find something cus of my symptoms. It really wouldn't be so bad if it wasn't for my worry for my daughter...its not a good feeling. Im just going to try to put these thoughts to the back of my mind and keep busy so i dont dwell on it. Its really at night that i seem to be worrying, the rest of the day im so busy i forget!

 

[Nev23]

Oh god, I dont know why I am posting here, im getting to the stage now where its sinking in and im scared, I cant sleep as im so upset....i cant even wake my OH, he cant seem to accept that anything is wrong with me and tells me to stop worrying. He wasn't there with me at the hospital, he doesnt know what happend and everything that was said and he doesnt understand that the problems they found only happen due to some damage to the brain / spinal cord. The neurologist was so sure that I have a neurological condition, he told me this without doubt as his tests showed up such abnormalities.

My mum has spoken to my auntie, her daughter(my cousin) has multiple sclerosis and our symptoms are very very similar, there is a rare type of MS that causes symptoms to progress slowly and continuesly, unlike the more common form of MS that causes episodes and remissions.

The other diseases they are testing me for are more unusual and not as common as MS.

At least if its MS I know its something I cant pass on to my daughter, im so concerned that i may have passed on a disease to her the thought of her going through what ive been through is killing me.

It was an awful realisation speaking to my mum yesterday, she said it is so obvious that something has been going on for years, she said it was staring her in the face but she was so used to seeing me like that it was just normal, its almost been such a slow progression that no one has noticed at the time, but hindsight is a great thing. We were going over symptoms, she reminded mr that i always get very shaky restless legs and she said she noticed me having problems walking on my left foot, she knew my left side is worst, which is true my friend also said as far back as 6 years ago she noticed me losing my balance ...now im always bumping into thinks and falling to the side as my balence is so bad...my legs are covered in bruises...
My feet are turning in so badly cus of the spastticity during the night or when im relaxed....

Im worried sick...but now its starting to seem less likely that it is something i can pass on to my daughter. That is a small comfort.

i know my symptoms have come on so strong cus of hormonal changes due to pregnancy, this means that even if it is not a genetic disease, i may not be able to have more babies as it can make things worse....my cousin is in the same boat...she cant have more kids as it may make her symptoms way worse.

I feel so foolish, I should have gone to the docs ages ago, I have suffered fro years of depression and anxiety and I guess I got used to feeling bad and didn't know what it was like to feel normal and healthy..

 

[sweetpea8]

wish there was something I could say xxxx

 

[Nev23]

Thankyou for your reply....i guess I just need to vent I feel so bad, its the most awful realisation and now the denial has gone I feel so scared..why did I not get help years ago Im worried for so many reasons. I've been through a huge amount of stress in my life,but now everything else pales in comparison to how i feel now.

 

[Wildfire81]

Actually I have relapsing remitting MS and was diagnosed in 2006, it is very slow going. My neurologist says it was passed on to me by my mother. I am not trying to scare you, as it is not as common. There are several different types and the chances of having a hereditary type are very slim. Please do not get upset that I have given you this info, I just wanted you to have the facts.
Good luck with your condition, and if it does turn out to be MS, it really will be okay, that I can say. Until I was pregnant, I was on a daily injection called Copaxone for 5 years with no relapses. The only relapse I ever had has come from the error my last OB made which caused me to have a bit of optic neuritis. I will always be here to talk with or pm if you want more info, and I have a great deal of medical knowledge. That is, if you do not hate me too much for being honest.

 

[Nev23]

Actually I have relapsing remitting MS and was diagnosed in 2006, it is very slow going. My neurologist says it was passed on to me by my mother. I am not trying to scare you, as it is not as common. There are several different types and the chances of having a hereditary type are very slim. Please do not get upset that I have given you this info, I just wanted you to have the facts.

I appreciate your honesty. Do your symptoms get any better? The neurologist said my disease is slowly progressive, so will not get better. It is interesting to hear that the relapsing type ofms can also be slowly progressive..i dont know what to think. Im already having some problems walking as i get tired and need to wear shoes with ankle support, im concerned about using normal use of my hands as they have found that its starting in my hands and ive been getting pain in them and some days i drop things.
If i have ms, i pray it is not hereditory.

 

[Wildfire81]

Actually I have relapsing remitting MS and was diagnosed in 2006, it is very slow going. My neurologist says it was passed on to me by my mother. I am not trying to scare you, as it is not as common. There are several different types and the chances of having a hereditary type are very slim. Please do not get upset that I have given you this info, I just wanted you to have the facts.

I appreciate your honesty. Do your symptoms get any better? The neurologist said my disease is slowly progressive, so will not get better. It is interesting to hear that the relapsing type ofms can also be slowly progressive..i dont know what to think. Im already having some problems walking as i get tired and need to wear shoes with ankle support, im concerned about using normal use of my hands as they have found that its starting in my hands and ive been getting pain in them and some days i drop things.
If i have ms, i pray it is not hereditory.

When I had my relapse I went in to my hospital for an outpatient visit.I was given something called IV-IG an the steroid solu-medrol. I just came in for 3 days, for 2 hours so they could give me the steroid. Soon after that I got better, and thank God, my eye problem went away.

 

[Nev23]

Actually I have relapsing remitting MS and was diagnosed in 2006, it is very slow going. My neurologist says it was passed on to me by my mother. I am not trying to scare you, as it is not as common. There are several different types and the chances of having a hereditary type are very slim. Please do not get upset that I have given you this info, I just wanted you to have the facts.
Good luck with your condition, and if it does turn out to be MS, it really will be okay, that I can say. Until I was pregnant, I was on a daily injection called Copaxone for 5 years with no relapses. The only relapse I ever had has come from the error my last OB made which caused me to have a bit of optic neuritis. I will always be here to talk with or pm if you want more info, and I have a great deal of medical knowledge. That is, if you do not hate me too much for being honest.

Sorry Hun I just replied then you must have added a bit to your reply.

Thankyou for reassuring me, I do not hate you for being honest...i appreciate your honesty. I wish I had been more honest with myself over the years!
im glad to hear that your condition has been okay for the last while..that is reassuring. I will pm you today..thank you x

 

[mummy2lola]

don't feel guilty Hun,u didn't know and it's clear what a fantastic mother u are by how much this is worrying u.there is also a chance that u have not passed this on and ur lo will b absolutely fine xx

 

[Nev23]

don't feel guilty Hun,u didn't know and it's clear what a fantastic mother u are by how much this is worrying u.there is also a chance that u have not passed this on and ur lo will b absolutely fine xx

Thank you ,*hugs* I hope I am a good mummy. If this is something that is hereditory then you are right, I may not have passed this on.
I knew I loved my daughter but its only now I realise how much I love her....i would die for her. Although they think it could be hereditory , after speaking with members of my family, we cant find the link for the hereditory spasstic paraplegia and we think my brothers condition really is seperate from mine. Im relieved to think that it may not be genetic,but at the same point I know its likely to be MS. There is MS in my family but like the lady above said, this is not usually hereditory. Where as this ******* paraplegia is most often hereditory so that worrys me more.

 

[Nev23]

Actually I have relapsing remitting MS and was diagnosed in 2006, it is very slow going. My neurologist says it was passed on to me by my mother. I am not trying to scare you, as it is not as common. There are several different types and the chances of having a hereditary type are very slim. Please do not get upset that I have given you this info, I just wanted you to have the facts.

I appreciate your honesty. Do your symptoms get any better? The neurologist said my disease is slowly progressive, so will not get better. It is interesting to hear that the relapsing type ofms can also be slowly progressive..i dont know what to think. Im already having some problems walking as i get tired and need to wear shoes with ankle support, im concerned about using normal use of my hands as they have found that its starting in my hands and ive been getting pain in them and some days i drop things.
If i have ms, i pray it is not hereditory#.

When I had my relapse I went in to my hospital for an outpatient visit.I was given something called IV-IG an the steroid solu-medrol. I just came in for 3 days, for 2 hours so they could give me the steroid. Soon after that I got better, and thank God, my eye problem went away.

hi Hun, sorry to hear about your relapse,that must of been really scary for . You must have been so relieved when your eye problem went away. I dont seem to have any relapses. My cousin has very similar symptoms to me, with a similar progression and she has been diagnosed with primary progressive MS...i dont want to jump to conclusions, but our symptoms and progression are uncannily similar.

 

[Wildfire81]

Actually I have relapsing remitting MS and was diagnosed in 2006, it is very slow going. My neurologist says it was passed on to me by my mother. I am not trying to scare you, as it is not as common. There are several different types and the chances of having a hereditary type are very slim. Please do not get upset that I have given you this info, I just wanted you to have the facts.

I appreciate your honesty. Do your symptoms get any better? The neurologist said my disease is slowly progressive, so will not get better. It is interesting to hear that the relapsing type ofms can also be slowly progressive..i dont know what to think. Im already having some problems walking as i get tired and need to wear shoes with ankle support, im concerned about using normal use of my hands as they have found that its starting in my hands and ive been getting pain in them and some days i drop things.
If i have ms, i pray it is not hereditory#.

When I had my relapse I went in to my hospital for an outpatient visit.I was given something called IV-IG an the steroid solu-medrol. I just came in for 3 days, for 2 hours so they could give me the steroid. Soon after that I got better, and thank God, my eye problem went away.

hi Hun, sorry to hear about your relapse,that must of been really scary for . You must have been so relieved when your eye problem went away. I dont seem to have any relapses. My cousin has very similar symptoms to me, with a similar progression and she has been diagnosed with primary progressive MS...i dont want to jump to conclusions, but our symptoms and progression are uncannily similar.

I am happy with my lack of progress. I do not have primary progressive, but relapsing remitting. I have done so well that after I have m baby I do not have to get back on the medication. I have had several patients with MS, so I know it could be so much worse...