Help, Im scared . . . . .

My mother was diagnosed at age 32 with MS. I am now 33 yrs old and have been suffering with some crazy symptoms and i havn't told any of my family. The past 5-6 months I have been feeling chronic fatigue daily and my muscles are weak in my arms and legs (can hardly carry laundry basket upstairs now) I have developed Petechiae on my arms and legs (minor), I have also had 3 bouts of "body tremors" i call them that last 10 minutes or so then muscles ache bad afterwards. I sleep well (so exhausted all the time) but never feel rested and i can't stand it anymore. I also develpoed Tinnitis and loss of hearing here and there then it comes back. I have such muscle pain that i need to get off my feet and lay down and massage my legs etc. I get numb tingly feeling mainly in legs and feet and have a problem with my balance I notice that i walk into doorways instead of THROUGH them, like my balance is off. My dr thought maybe Lyme Disease and i tested positive for the Lyme screening so they did a Western Blot last week and it was negative. He says the screening was a false pos. and he's now sending me to Rheumatologist next week and i am terrified about the MS. Im not asking for anyone to diagnose me but would like some opinions on what this could be, i am so scared to go next week.
Thank You

[RedFlame]

Hi fox24,  You really do sound like you may be having onset of MS.  The thing is that there are so many MS mimics.  Things like lupus, lymedisease etc., etc.,  It does sound like your doctor is beginning the 'rule out' process.  

Have you asked your doctor if you have MS?  Does he know about your mother?  I'm thinking maybe he can relieve you of some of your fear if he thinks that you have something else.  

I'm sorry you are so scared.  I encourage you to talk with your family even though you don't want to.  You really need them to support you and help with everyday tasks as well.  

Red

[fox24]

Yes, thank you for responding, im so scared. He does know about my mother. She was 32 when diagnosed and only had 2 children so i figured im 50/50. I dont know though. He hasn't said anything about MS but i find it strange he's sending me to Rheumatology. I have asked him and he just tells me "you need to keep th appt and let them run some tests" i dont find that very fair that he wont give me anymore info and leaving me high and dry and scared to death.
Unfortunately my mother and I havnt been on speaking terms for many years (grew up in foster care), so i cant get any other info. My children ( 2 teens ) know what im going through and my boyfriend and are being very helpful to me.
Thank you for your insite, i appreciate it alot.

[Lulu54]

Hi and welcome to the forum here.  It sounds to me like your doctor is working on ruling out other diseases.

MS is a diagnosis of exclusion - they have to work through all the other possibilities and after they have been eliminated, they see what is left.  There are so many mimics and seeing the rheumatologist will help eliminate or confirm a few on the list.

I'm glad you have support from you immediate family - that is important in not feeling so alone.

We're here to answer questions or just keep you company.  Let us know what you need ,  ok?

welcome again, Lulu

[Heather3418]

I am glad that you are under the care of a doctor.  He needs to exclude all the disorders that mimic MS.  Even though your mother has MS, you still only have a slight chance of having MS yourself.

I was diagnosed in my early 40's and my 35 year old daughter was just diagnosed with MS the end of last year, also having fibromyalgia.  I just never in a million years, thought my daughter would also be diagnosed with MS.  It broke my heart and I am the one that felt guilty.  I still feel so guilty, as there is something that I have passed onto my daughter, from me.  Wish the researchers would concentrate on that a bit more.

They need to find the connection between parent and child.  Maybe it would lead them to find out (at least) what causes MS.

I am so sorry you are going through this.  I would talk to your mother about it.  You need her right now.  If anyone would understand what you are going through, it would be here.  I am sure she will be there to offer you support and comfort.  My daughter and I help each other, when either of us is not feeling well.  She said that she now understands everything I have complained about over the years, especially the pain I suffer from.  I'd give my life to spare my daughter from MS, but it sure does help to have someone to talk to about it.

Please, let your mom know what you are feeling and going through.  And remember, this Forum and everyone hear will help in any way that we can.  You've landed in on a fantastic group of people, that really do care.

All the Best,
Heather

[michelleislay]

i too, am so sorry to hear how scared this has you.  please do reach out to your family for help...keeping it all to yourself could be making your fear much more intense.  just being able to voice your concerns will help, if only by a bit--but every bit helps.

great that you have found a voice here though--this seems like such an incredible place to be.  nothing quite like being understood!

i am going through the same process of ruling things out, and my doc has done a ton of bloodwork (lyme's has been ruled out too), sent me to an allergist/internal medicine specialist and i know that some of the bloodwork he ordered was rhumatologically related.  

best of luck to you on your journey and please keep in touch!

michelleislay

[fox24]

Thank you so much for replying. Yes im very worried and upset. Im afraid of what they will find. I cant believe i been sick for the past 6 months. I just want answers and get back to life im missing out on so much right now.
I am not close to any family - i was raised in the system (state took me away from mom) i have no contact with her to this day. So i understand what ppl are saying about i should contact mother and have her help me through this, but it's not gonna happen. Im on my own. My 2 teens are supportive and my boyfriend (who's also scared for me) is helping me through this too.
I see the Rheumatologist on Aug 18th (not soon enough). The Petechiae spots are getting worse and now im having awful pains in my lower back rt side (kidneys??) who knows. I just want all this to stop already.
Can you add me as a friend? I could use some. . . . . I feel so alone.
Thanks

[Sparkysarah]

Hi there

You sound like you really need some support at the moment. All I can do is to encourage you to try and keep an open mind about going to see the rheumatologist. Just becasue you Mum has MS does not necessarily meant that you will have it..although I wd agree with Red that you do seem to be experiencing some neurological symptoms.

At least you have two great kids who now know that their Mum is experiencing a few problems and I think it is much better to be honest than try and hide things.

Do please stay around on this site...you will receive support and friendship and there are many knowledgeable people here. I do not think that petechiae is MS related. Also have you any other signs of a water infection if your kidneys are hurting and if so then it wd be a good idea to go to see your dr in case you need some antibiotics.

Take care and you are not alone.

With love and hugs

Sarah

[rendean]

Hi,

I'm sorry you are so scared and frightened and do understand  why. I will say stress will make ANY disease worse. To my knowledge, petechiae are NOT a symptom of MS. They are a symptom of some rheumatological disorders though.

Keep your appointment with the rheumatologist and let him run some tests and give some better answers. Feel free to come back here and ask more questions.

Let us know how the appointment goes! You are always welcome here!

Ren

[fox24]

Thanks a million, I will keep everyone posted on here to let them know what happens on Aug 18th. Thanks for making me feel welcome!