Hello, I'm Lorrie with MS

[MSLorrie]

Just diagnosed after years of being misdiagnosed or told my symptoms were all in my head.

I think I will be trying copaxone and see how that works for me.

My biggest problems are fatigue, cognitive/memory problems, poor balance and difficulty walking more than half a block. Too many other symptoms to describe....right now I have very blurry vision from ON.

Going to see my Neuro in early May to start the Copaxone and see what else I should do.

I'm so glad for this site because I'm feeling overwhelmed, scared, sad and alone. I'm having relapses every month now and I'm going downhill fast.

[22cyclist]

Hi and welcome Lorrie!

I was on Copaxone for a long time when I was first diagnosed and loved it! I hope your ON calms down so you can see better soon.

Please check out the rest of our boards and chat rooms to share your experiences too!

Take care
Lisa
Moderation Team

[aitch10]

Hi!

I'm so sorry you have to be here and know that it is scary and isolating and all the stuff you said.

I hope you have luck with the neuro and get on the Copaxone. I was on Rebif for years, had babies and have been on Copaxone for a month or so now and really like it. I'm also in physical therapy now and highly recomend it.

[MSLorrie]

Thank you both so much!

I am kind of scared at the moment but your replies and the posts by all the people here make me feel better, make me feel like maybe I will get through this.

Thank you especially for sharing your experiences with copaxone because I'm pretty nervous about starting on that and giving myself shots.

I am curious, do the shots hurt really badly? Is it worse than, say, the sting of a shot of anesthetic like the one they give you when they do the spinal tap?

Thank you so much, I really appreciate your replies and I am very grateful for this site!

[Dsdickinson]

Copaxone shot

I have been using it for 3 months and it's not bad at all. I use the auto inject and I am experimenting with the depth gauge to get it right which helps stop stinging etc...

[MSLorrie]

Thank you so much!

I am hoping I will be able to get the auto injectors too. Thank you so much for reassuring me, I appreciate it very much!

[jennbrooke]

Welcome

Welcome, Lorrie! I'm glad you finally have some answers as to what was going on. I'll be following your story, and how things are going with you, as I head into my own neuro consult in late May.

[hunterd]

WELCOME MSLORRIE!!!!! great to have you here, I am glad you found us! Please don't be shy, any questions you have just ask them. The members here are very helpful. Good luck.

[Cat Mom]

Hi Lorrie. Hope you have success with Copax. I have been on it since 2007, only 2 flares since... the last was in Jan 2009. There's lots of good advice here, and plenty of support and encouragement. Please keep us posted on how things are going.
Jen

[MSLorrie]

Thank you so much, you guys made me smile!

I don't feel so alone and scared anymore!

[MyGirlsMom]

Hi lorrie!

The hardest time is just after diagnosis...the first year of living with MS is hard, but you can do this and it will get easier.

I take Copaxone and I never, ever thought I could self inject! I still vividly remember sitting at the kitchen table with my Copaxone nurse and husband, and crying about self injecting. I used the Autoject for the first 6 months and then and now inject manually. Some shots hurt like crazy and others not so much. I inject at night so I can just lie in bed and not deal with the discomfort. Like most of us, I hate the shots but tell myself that it helps me battle this crazy disease. I also now try to think about the shots a day at a time. (BTW, rotation is key!)

I hope you find support and information here.....it is truly a great group! You can do this and you re NOT alone! Hugs!

[Glenna1962]

Just diagnosed after years of being misdiagnosed or told my symptoms were all in my head.

I think I will be trying copaxone and see how that works for me.

My biggest problems are fatigue, cognitive/memory problems, poor balance and difficulty walking more than half a block. Too many other symptoms to describe....right now I have very blurry vision from ON.

Going to see my Neuro in early May to start the Copaxone and see what else I should do.

I'm so glad for this site because I'm feeling overwhelmed, scared, sad and alone. I'm having relapses every month now and I'm going downhill fast.

Hey Lorrie , I am curious as to what changed the doctors mind from it being all in your head to MS? I have been suffering years. Apparently I only have three lesions so it can not be MS .......(silly doctors) But recently what I am suffering from is full body tingles, started on just right side and now full body and tremors....I was told because I am depressed this could be the cause of tinglesa and tremors and when I asked the doctor why after all these years he had no explanation for me. Also some doctors say you are a smoker so smoking can cause lesions........I am starting to think doctors make up whatever....And yes I am depressed who wouldnt be living years in this agony..Glad they found out what is wrong with you and can not treat you!

[MSLorrie]

Hi MyGirlsMom!

Thank you so much for your post, I feel less scared and alone now!

I hope I won't freak out too much with giving myself injections. This is really gross and TMI but I used to use a needle to pop pimples when I was young so maybe I could think of it that way, that I already have experience with needles, LOL!

I think I'm just trying to adjust to a new view of the future. Wondering what comes next.

Thank you again!

[MSLorrie]

Hi Glenna1962, I'm sorry you are going through all this.

I hope you get help from the doctors soon!

It's such a long story in my case...hope I won't bore you to death here.

My first symptoms of MS were bladder frequency, urgency, and nocturia. I wasn't able to go longer than half an hour between voids and that disrupted my life greatly.

I felt like I had a bladder infection all the time. I slept badly at night and had to drop out of the workforce.

I was misdiagnosed with Interstitial Cystitis and tried every treatment they had for that, to no avail.

I even had an experimental device implanted. I tried it for five years, and it didn't help me at all (it didn't help anyone in the trial so it wasn't just me.)

An AF urogyn came to the conclusion that I was crazy because nothing helped me, and gave me the diagnosis of "functional somatic syndrome" which was put on the computer system for every doctor to see.

So I didn't dare tell doctors when I had unusual fatigue, brain fog, aphasia, and spots of numbness on my thighs, and blurry vision, because I already had "crazy lady" diagnosis.

Finally I had a bout of Transverse Myelitis I could not ignore because of the worst pain I've ever had, and because I could no longer walk.

I went to the ER and thankfully they believed me and my husband and put me in the Neurology ICU.

I was misdiagnosed by the neuro in training at Walter Reed as having Guillain Barre Syndrome. In spite of the oligoclonal bands in my spinal fluid and symptoms that did not point to GBS.

I had to be catheterized, bowels stopped for five days, blood pressure shot way up, etc.

Problem was I could not have an MRI due to the implanted device.

After my "GBS" I kept having relapses and symptoms (thankfully my bladder symptoms are much better now) and I asked my PCP if I could go back to the neurologist.

He said no. Told me it was all psychological.

I got the medical device removed so I could have an MRI, and the next bad spell, I went to the ER and got the MRI etc.

I have not gone back to my PCP. I will never go back to him.

My husband is retiring from the Army in five months and I am counting the days until I can enter the civilian healthcare system.

I am struggling with anger towards the doctors who misdiagnosed me and harmed me. I daydream about confronting them.

I hope you get help soon. I found it better to go to the ER to find answers.

[Glenna1962]

I hope you get help from the doctors soon!

It's such a long story in my case...hope I won't bore you to death here.

My first symptoms of MS were bladder frequency, urgency, and nocturia. I wasn't able to go longer than half an hour between voids and that disrupted my life greatly.

I felt like I had a bladder infection all the time. I slept badly at night and had to drop out of the workforce.

I was misdiagnosed with Interstitial Cystitis and tried every treatment they had for that, to no avail.

I even had an experimental device implanted. I tried it for five years, and it didn't help me at all (it didn't help anyone in the trial so it wasn't just me.)

An AF urogyn came to the conclusion that I was crazy because nothing helped me, and gave me the diagnosis of "functional somatic syndrome" which was put on the computer system for every doctor to see.

So I didn't dare tell doctors when I had unusual fatigue, brain fog, aphasia, and spots of numbness on my thighs, and blurry vision, because I already had "crazy lady" diagnosis.

Finally I had a bout of Transverse Myelitis I could not ignore because of the worst pain I've ever had, and because I could no longer walk.

I went to the ER and thankfully they believed me and my husband and put me in the Neurology ICU.

I was misdiagnosed by the neuro in training at Walter Reed as having Guillain Barre Syndrome. In spite of the oligoclonal bands in my spinal fluid and symptoms that did not point to GBS.

I had to be catheterized, bowels stopped for five days, blood pressure shot way up, etc.

Problem was I could not have an MRI due to the implanted device.

After my "GBS" I kept having relapses and symptoms (thankfully my bladder symptoms are much better now) and I asked my PCP if I could go back to the neurologist.

He said no. Told me it was all psychological.

I got the medical device removed so I could have an MRI, and the next bad spell, I went to the ER and got the MRI etc.

I have not gone back to my PCP. I will never go back to him.

My husband is retiring from the Army in five months and I am counting the days until I can enter the civilian healthcare system.

I am struggling with anger towards the doctors who misdiagnosed me and harmed me. I daydream about confronting them.

I hope you get help soon. I found it better to go to the ER to find answers.

Lorrie,
First of all sorry for all the typos last time. And for the ones I am about to make
Holy Cow you have been put through the ringer. I got told I have lesions, tremors, tingles because of depression because daughter and grand daughter passed away quite a few years ago. This was by a recent visit to MS Neuro who also said but you do have "jerky reflexes" and said my lesions were small so he was not worried about them.
I have suffered for years with SEVERE muscle cramps in lower legs and feet. Frequency and URGENCY potty issues. I have to go about 3-5 times every night regardless of the amount of fluid intake prior to bedtime
nightmare after nightmare