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Patients Multiple sclerosis

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Member Carenity • Community manager
Posted on

Hello everyone,

Welcome to the Multiple Sclerosis community!

It is true that it is not easy to know the path / experience of each member with MS and know who to reach out to or experiencing the same as you. Trust is essential to be able to talk and share calmly, especially in a community like this.

Therefore. we encourage all members in this group to introduce themselves.

Share a little about your story, when you were diagnosed, experiences, etc. with MS to introduce yourself to the community! 

Beginning of the discussion - 10/7/19

Welcome to the MS community!
1

Member Carenity
Posted on

Hello everyone! I was recently diagnosed with MS 6 months ago and was started on Gylenia. Everything's going good except one problem in the last few weeks. I keep breaking out in hives, it may seem wired but, I have noticed them getting worse when I am active like working or found house cleaning. They are all over my arms primarily. If you have experienced these or have any ideas I would appreciate it. I'm taking Benadryl to try to keep them from worsening. Any ideas?

Thanx

Welcome to the MS community!
1

Member Carenity
Posted on

Hi my name is christy and I was just diagnosed with MS 5 days ago and I need any advice about best meds to anything else anyone wants to share. My father had MS but hes been gone 7 years and he had massive strokes before the MS so hard to tell with his situation. 

Thanks

Welcome to the MS community!
1

Member Carenity
Posted on

Hi Everyone.  My name is Linda and I was diagnosed with MS last month.  I must say that it was a shock as one day I was fine and the next day I woke up and my leg was numb.  Went to the doctor and that then led to the long road of diagnosis of MS.  Just getting to the point of choosing the right meds to start fighting this disease.  Glad to meet everyone and hope we can find help and solace with one another as we make this journey together.

Thanks

Welcome to the MS community!
1

Member Carenity
Posted on

Hi! I’m Meagan :)

I'm 31 and have been sick for years. I’ve been diagnosed with fibromyalgia, anxiety and depression . 
I have dealt with the feeling of electricity running through my body for years now, and it’s in my spine constantly. I don’t like my back touched because it sends shooting nerves through my whole spine 

i occasionally get sciatica, but recently I’ve been dealing with my hands and arms going completely numb.

i get migraines often, I have sensitive ears to small sounds and can only sleep with earplugs 

the weirdest symptom I get that “during a flare” there will be an area of extreme tenderness. Sometimes it’ll be the whole side of my face, neck and scalp. This lady’s for a couple of weeks and on different occasions has effected  my arms 

I try not to complain because no one understands 

I had an MRI a few days ago and it was normal.

I’m also dealing with terrible neck pain 

I just feel defeated and hope that someone can chat with me. I’m really curious about the tender spots. Because I can’t find any info on this symptom 

Welcome to the MS community!
Member Carenity
Posted on

I’ve also been losing bladder and bowel control. 

Every symptom matches MS, but symptoms of a pinched nerve in the neck could explain some of my symptoms.

Welcome to the MS community!
Member Carenity
Posted on

My name is Katelynn, I have not yet been diagnosed so my only option is to go searching for people who feel similar to what I go through . All of my symptoms lead me to neurological problems and autoimmune disorders, MS in particular. MRI came back normal, CT normal, blood normal, my symptoms NOT normal!! I was also one day my normal self, the next day I was hit with many different problems like a ton of bricks. The first being migraines, eye pain, visual disturbances... I thought I was in septic shock or meningitis! The hospital admitted me and told me I " possibly " as mastoiditis. The gave antibiotics and it did nothing but got different and worse. I feel exhausted... Defeated . Hopeless. Ive gone to the ER 4 different hospitals 8 different times and 90% of the time they look at me and say you arent dying your a healthy 21 year old female. Fallow up with PCP. I do.. I see the specialists. Neurologist saw me once said migraines and fallow up in 2 months. Not one of any 7 different migraine medication (yes i gave it time) has worked so they just keep trying different meds. My new med is an antiseizure... I was also scheduled for an eeg that I missed. I dont know how to feel think or what to do any more. Are diseases like MS hard to diagnose? Am I crazy for my disbelief in the doctors or have other gone missdiagnosed and gotten the run around also? Has anyone started off being diagnosed with silly crap like head aches and anxiety when you KNOW what you feel is far from it?

Welcome to the MS community!
1

Member Carenity
Posted on

@Hidden username 

Hi Katelynn,

I am sorry to hear about your situation.  The answer to your question in your post is yes, there are others that have gone through a lot before a diagnosis.  I am one of those people.  I am 62 years old, however when I was your age I had severe migraines and nothing worked for me either.  I also had severe stomach and bowel problems my whole life.  Doctors just thought it was all in my mind and sent me on my way.  I knew in my heart that something was wrong with my immune system, but there was nowhere to go when no one believed me.  So, I got on with life the best I could.  This year, I finally found a gastronologist  that found the answer to my stomach problems and I had three surgeries to get that fixed, after all these years.  Also, went on meds to help with the IBS.  I thought I was finally going to live a normal life.  Then I woke up and had the numbness in my leg.  That led to the MS diagnosis.  So my best advice to you is this.  Write down a history of your symptoms and be very analytical with the doctors.  I was really careful to not be dramatic or overstate things, I was very factual about everything.  I researched my symptoms online before I even went in to see a doctor and was able to talk very factually about how I was feeling and what was happening to me medically.  I made sure that I was polite and did not come off as if I was over reacting to anything.  That is just my best advice.  I know how frustrating it is, but believe me, the medical community does not look at us as individuals any longer.  They get a "feeling" about you when you walk in the door, and it is up to you to change that perception.  Stay cool, calm, and collected and very factual.  Find a doctor that will listen.  It is a long and tough search, but it is worth it in the end.  If you really feel that something is wrong, and you are sure about it, keep up the fight to get diagnosed.  I didn't do that, I lived with it for 40 years before diagnosis.  I wish you all the best, and hope you find some solutions very quickly.  Take care,  

Linda Pavek

Welcome to the MS community!
Member Carenity
Posted on

I appreciate this so much, Linda. My husband even at time wonders if I am over exaggerating or if maybe i need a mental health specialist rather an opthalmologist , neurologist , so on. Even when i promise I have real life symptoms I know what is anxiety from real problems this one day hit me I did not feel all these horrible things before. I find myself in the ER at least 2 times every other week. I'm just in so much pain and end up with an anxiety attack not knowing what is wrong with me! My limbs, feet... Hands go numb or prickly my vision is in a down hill spiral. I get tingling up and down my back. Such such bad migraines. I almost feel my brain will pop or start to bleed from that pressure in my head and I can hardly open my eyes... Little sounds bother my ears. When I see my PCP all he says is "These are a lot of symptoms, looks to me like anxiety." Frustrating! Thank you for at least confirming that not all get tested and like magic get a diagnosis. I am beginning to feel a bit crazy. Like "are these normal occurrences? Am I being dramatic? Could this be very minor and I am obsessing?" But after 2 months it begins to be hard to believe it is just "headaches, migraines, sinus infection...." I have even been told I had lymphoditis. Literally any possible diagnosis they can rationalize and send me home with and give minimal to no care for the symptoms . My PCP had me on ibuprofen so long I was salvating and spitting up blood so he told me to stop taking them immediately. Well... I did! Now my only pain relief is out of the window because I refuse heavy drugs! I hope if I do not at least get a diagnosis that I feel any better or find means to cope. Do you know roughly the average time a person will live with MS or a disorder before diagnosis? That's actively seeking help with my doctor, seeing specialists etc. I get so discouraged being told most of it is in my head. This you know for yourself, is very much not!

Katelynn Verville💜

Welcome to the MS community!
1

Member Carenity
Posted on

@Hidden username I feel for alot of what you are going through. Unfortunately the only diagnosis we have in common is the anxiety and depression. I am still early on in working on the Big one... The one that explains all that's left unanswered. I hope you feel better. I am here for support !