I am so lost can someone help me?

[jaybirds_angel]

i've been having odd symptoms for a few years now and every time i go to the er or my small town dr i kind of get told it's in my head. i don't know what to do i had a dr that told me it sounds alot like ms but he was transferred after getting upset they were treating me for a panic attack when i wasn't having a panic attack. i don't know if it's ms i know that an mri said no, but i was told that that could be just that it hasn't reached that stage yet. so i figured maybe someone here could tell me if it's something that might be ms or if i need to try looking elsewhere.

1) tingling in my extreminies fingers arms toes and legs sometimes in my face and along my shoulder blades.
2) pain like my skin is too tight like my muscles just want to pop out or my bones are too big (not even sure how to explain other than everything just feels too tight)
3) odd smells that only i can smell like rotting blue berries.
4)confusion sometimes that makes it hard for me to talk or stream words together in the right order
5) iching, buring, but nothing there on my arms. which one changes all the time
6)pain in my joints which joints changes and it's really bad pain
7)very bad pain in my legs
8) vision problems sometimes tunnel vision and sometimes aura vision.
9) tremors in my hands and feet
i do have migraines and i also deal with sleep paralysis i have a very low blood pressure and that doesn't raise when i'm having issues and they all come and go they are not constant sometimes i'll have months where i'm good but then i have time where i'm so bad i can't function. i don't know what to do i don't know what to say to drs

i am an at home mom of three happily married with a great support network i'm 32 years old and this has been going on and off for about four years

[Alicious]

That sounds awful!

Have you ever had bloodwork done to check vitamin/mineral levels, etc?

[4boysmom]

Do you have times where these things only happen on one side of your body? MS generally only affects one side at a time.

[Dale76]

i've been having odd symptoms for a few years now and every time i go to the er or my small town dr i kind of get told it's in my head. i don't know what to do i had a dr that told me it sounds alot like ms but he was transferred after getting upset they were treating me for a panic attack when i wasn't having a panic attack. i don't know if it's ms i know that an mri said no, but i was told that that could be just that it hasn't reached that stage yet. so i figured maybe someone here could tell me if it's something that might be ms or if i need to try looking elsewhere.

1) tingling in my extreminies fingers arms toes and legs sometimes in my face and along my shoulder blades.
2) pain like my skin is too tight like my muscles just want to pop out or my bones are too big (not even sure how to explain other than everything just feels too tight)
3) odd smells that only i can smell like rotting blue berries.
4)confusion sometimes that makes it hard for me to talk or stream words together in the right order
5) iching, buring, but nothing there on my arms. which one changes all the time
6)pain in my joints which joints changes and it's really bad pain
7)very bad pain in my legs
8) vision problems sometimes tunnel vision and sometimes aura vision.
9) tremors in my hands and feet
i do have migraines and i also deal with sleep paralysis i have a very low blood pressure and that doesn't raise when i'm having issues and they all come and go they are not constant sometimes i'll have months where i'm good but then i have time where i'm so bad i can't function. i don't know what to do i don't know what to say to drs

i am an at home mom of three happily married with a great support network i'm 32 years old and this has been going on and off for about four years

You have listed a lot of MS symptoms and it sure sounds like it could be. I'd like to point out that the above comment about MS only being on one side is true for many but not all, for me not. For me nothing is sacred in my body, I get pain, numbness, sore joints, tremors etc all over.

Have you had MRI's of both your brain and spine?

Unfortunately you may have to just keep going to random doctors till one listens, you are not crazy and almost everyone who has MS seems to experiance similar problems with doctors. Remember well extreme to the person with MS most the symptoms are invisible to the outside world.

You should continue suggesting you may have MS to you doctors and ask if you can be refered to an MS specialist. You should also write a list of you symptoms and give a copy to you doctor(s). Some of the threads on the forum have helpful ways of discribing some of the symptoms which may better get you point across.

Good luck and welcome to this forum.

[jaybirds_angel]

thank you

sometimes it is one side sometimes both and i'm always so tired i have a diary that my husband helps me keep about when and what symptoms i have all of my blood work comes back normal i've been checked for thyroid problems and hormone levels thank you for helping me see i might not be crazy so it's just keep telling them lol. i will and i'm very glad to have found this place.

[aspen]

I am in limbo, angel, and got to the point where I refused to go to the doc/ER for anything no matter how bad. One too many mental health/anxiety lectures. I got to the point where I believed them subconsciously.

Finally started seeing a counsellor, then a psychiatrist, who dragged me back to reality. The psych prescribed ER visits for any thing new that came up so it was documented; told me to refer all docs to his report even before they took my history.

It has been useful. Sorry about all your symptoms, I've had "too many" as well (although some majors in my case are one sided). Obviously something is going on. whether ms or something different -- keep on keeping on .

[jaybirds_angel]

i get that

i've stopped going to because i'm so tired of being told it's in my head and the anti anxiety meds pile up but like the one dr said i'm the calmest anxiety patient he's ever seen. i live in a small town full of pill heads and no matter how much i say i don't want pills i think they assume because i'm a young woman and healthy for the most part that that's why i'm there. i'm in some bad days right now and i worry that my kids and my husband are starting to feel the stress. i've been told it's TIAs and epilepsy but they won't tell me what type of seizures i know they are not grand or pete mal because it's nothing like the seizures my daughter has

i think maybe the er for new symptoms is a good thing i'll keep trying my husband keeps pushing for it and so does a very close friend that very close friend is also the same person who suggested i find a ms group to see if i could find some answers with people who are going through this

i started an online search about what is wrong with me honestly i was looking for mental issues and found that ms is the only thing that i've found that explains everything even things i really just thought were in my head from the start. or things i've put to being a busy at home mom with an autistic son and an seizure filled youngest on top of raising a teenager who cuts needless to say i'm the type of person to put myself last, but it's to the point where i've had two weeks of bad days where i can't even get up to clean because i'm in pain and i just want to cry i'm scared

i just want to get better or at least know what i can be doing or what might happen i just need to be able to plan better if that's possible lol.

[Mamabug]

Welcome.

Although anxiety plays a role in MS, that doesn't mean it's in your head.

Keep pushing for compassion and understanding from those around you.

~ Faith

[tortis]

Hi and welcome.
Many of us here were told it was all in our head. I was told that from the late 70s til the spinal tap and mri confirmed the MonSter in 1998. After awhile you start doubting yourself but you know your own body and if something is wrong then something is wrong.
Have you had a spinal tap? It also finds other things that can do all those symptoms also. But do not give up looking.

Good luck!
PEACE


Tortis

[jaybirds_angel]

no

no spinal taps but lots of mri's of the brain only i couldn't give up if i wanted to my husband won't hear of it. i will ask for a spinal tap kinda scared of that but if it will help will that tell you before an mri?

[tortis]

Hi again, I can not believe your neurologist has not ordered a spinal tap. It can find many things that can be treated more easily than M.S. plus there is a criteria for diagnosing the MonSter and it is not easy to get a diagnosis without one, not impossible but harder but the lumbar puncture might find something they can easily treat.
The test is not without some risks but they are done every day. I wear out very fast because I am one finger typing, look for some posts by 22cycleist she is really good and knows the right tests. She may even see this one and respond. I am hitting the wall if you have any questions just let me know.

PEACE
TORTIS

[CatMom0001]

Angel, you mentioned going to ER and to the doctor, but have you seen a neurologist?

Also, you said you live in a small town, do you have a larger city within a couple hours of you? You may be able to find an MS Specialist in a larger town or city.

Keep looking for the right doctor. It sounds like you need MRI's of your brain and whole spine, along with lumbar puncture.

Glad you found MS World, it's a great place for info, support, and fun.

[tspaulding]

I was diagnosed with RRMS in 1995 and never had a spinal, only an MRI on brain/brain stem.

Spinal tap is not always indicative of ms, so I would speak to your neuro about this.

[J-Bo]

Have you had MRI's of both your brain and spine?

^^^^
This!

There wasn't enough to see in my brain MRI to diagnose me, but when they finally did MRIs of the thoracic and cervical sections of my spine along with a spinal tap, it was conclusive, or at least as much as it can be. The spinal tap wasn't nearly as bad as I expected. They numb you up pretty well, and it just feels a little weird, and done it a short few minutes. I'm sure a lot of other people here would tell you the same.

Also, there are many symptoms of MS, and there is wide variation in what subset of them any one person has, but reading down your list, every single one of them is a known symptom of MS. Does that prove it? No, but I think it's ridiculous that anyone would say it's all in your head.

By the way, I live in a city with a much-touted medical system, but had to go to the Cleveland Clinic before someone figured it out, so if you have the means to go to Johns Hopkins, Mayo Clinic, Cleveland Clinic, or some place like that, you should. And as someone else said before, you at least need a neurologist, or ideally, a neurologist who specializes in MD.

Good luck. I didn't want this lousy disease--nobody does. But I knew something was horribly wrong, and having a name for it didn't make that fact any worse. And it's better than not even being able to explain to people what's wrong with you. I think I hated that part the worst before I learned the truth.

[susa_133]

Some remedies for pain and suffering

Hi, I am Susa - I have an audio blog - i am legally blind and 3/4 deaf with MS and eye muscle movement disorder casues blindness - and photophobia...

I have files up for Sleep Paralysysis disorder as I sufferred from that many times in chil.dhood and then it ca,e back when i was 44 - i am now 55, and - look at my soundclick website url - there are 216 voice files - help yourself - thewy are all free mp3 downloads - it has taken 2 years for me to upload them, i am trying to write a book on how to relieve suffering from PAIN 'events' - remember - in sleep paralysis you can control your dream by asking yourself - "AM I AWAKE or AM I DREAMING"? - if you can be that aware - you can lucid dream and do things you can't do in real life!!!

Everythiung we receive in life is a gift and a blessing - just doesn't feel like a blessing as it occurs - it is the EXPERIENCE and what we learn as humans that determine our levels of SUFFERING...

Love Susa




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