Was diagnosed last fall (57 yrs old) with RRMS. The original diagnosis of transverse myelitis (by my UK neurologist) was "upgraded" when we moved back to the US (Montana). The news was more or less expected so it was not a bolt out of the blue, but coming to terms with this is a bit harder than I imagined it would be. My wife is a huge support and a great resource as her mother suffered for over 40 years. And reading all you comments in others posts has been hugely encouraging. I've been on Ampyra for about 3 months and started Copaxone today so any hints or experiences on those 2 drugs would be welcome.
and so the journey begins...
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pmbevac
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Hi pmbevac ! The first neuro I went to was not an MS specialist and he diagnosed me with Transverse Myelitis too. This was after a very simple office exam: no MRI's, no other tests. When I was getting ready to leave, he gave me a lecture about not going on the internet to get information about TM. At that point, I had been working in technology for over 13 years and he basically just waved a red flag in my face.
So...naturally when I went home, I looked up TM because I had never heard of it. I read info from multiple quality websites and knew from what I read that the neuro was wrong. So...I kept pursing a diagnosis and months later found another neuro who ultimately diagnosed RRMS after proper testing. He also read me the definition of TM out of a medical text to demonstrate to me that I did not have TM and never did.
My first DMT was Copaxone. It took my body a few months to get used to it and not get itchy welts at the injection sites. I ultimately had to give up injecting in my upper arms because I got lipoatrophy where I was injecting. I had the same problem other places but it didn't hurt as much as in my arms. (And I'm not thin.) Over time, Copaxone stopped working for me and I'm now on Tysabri. Also, while I was on it, I experienced 3 PIR's. (Post injection reaction.) If you don't know what those are, you really should look them up so you know what to expect. Not everyone has these but they are scary. If I hadn't known what it was, I would have gone to an ER...it was that bad.
Raingrrl - Pretty much the same story, but the neurologist had MRI data & could see the lesions on the spinal cord, but couldn't tie in the brain lesions from that MRI to form the diagnosis. And yes, as a communications engineer, as soon as they tell me to not look up data I feel compelled to do just that.
So far the Copaxone (1 injection, not much of a sample size) seems to be okay - no unexpected or adverse reaction. Time will tell if all the injection sites are a benign...
The Ampyra has been a great success, but not without some minor side effects (slight sleep disruption, itchy skin) but so far worth the trade-off.
erash - Thanks for the welcome. Shame about the Ampyra, seems to work well for me. So far the actual injection is painless, don't feel the needle - the stinging, burning & itching afterwards is manageable.... so far.
Welcome pmbevac . I was on Copaxone for 10 years. I had a few weird reactions during the first couple of months. THe neuro kept encouraging me to stick with it. Neuro said that it quit working for me, but I think it was just the undue stress I was on related to my father's death and my husband's illness.. I'm on Gilenya now, but I'd love to go back to Copaxone one day.
Iona60 - thanks - How did your Neuro detremine the Copaxone quit working? Just more relapses? Interested in what to look out for.
Sorry to hear about your dad & husband...
I hear different stories about how stress is/is not related to relapses. Since we can not live stress free lives, it would be interesting to know which, or how much, stress can cause relapses.
pmbevac The determination that my neuro uses to decide if a medication is working is 2 or more events (relapses or new plaques) in one year. In my case I had 2 relapses and 1 new plaque.
Welcome pmbevac pmbevac I hope you grow to live this place like I do. I think we all go through period of acceptance and denial at the beginning. After two years I was still having periods of denial. Our lives have been dramatically and unwelcomingly flipped upside down.
I have been on Copaxone for almost two years. As you get used to it, the welts just become a part of life. I chose it because it is not an immunio suppresent and it does affect your liver like many other meds. So far it has worked well for me. I have only had one relapse.
Thanks Karen-x. The difficult thing about determining if any of these DMTs are working is you can't compare what would happen if you didn't take the drug. I guess this is where the experiences of other sufferers & the Neuro come into play, and just having faith... The Ampyra I know is helping based on ability when I take it or not.
I'm also going thru periods of acceptance & denial. But IT is always there on the edges of life with constant intrusions into everything I do - I can ignore it for a while but then I have to plan everything around diminished ability and maintenance. Kind of like the intrusion your first child brings into your life, but not nearly as welcome or rewarding!
I totally get that. Be assured that feeling of it always being on your mind and intruding will diminish. It won't go away completely, at least it hasn't for me.
Hello pmbevac, I'm Fancy1959 and I'm officially welcoming you to this wonderful chat room. I am sorry it took so lon. Life has been busy and waits for no one. 😕
As you have found out this place is an awesome and safe place to come voice concerns, ask questions, and just listen to the story about successes and failures. We learn as much from our failures as our successes really and are encouraged to share their entire Journey with us. Having said that we do it to keep everything in the chat room very positive and supportive. As you have found out with your own diagnosis sometimes it is so very hard to accept and the denial is so very easy to fall back on. When and if someone were extremely negative with you that would make your denial easier to use as a crutch and the depression that lurks in the shadows and often accompanies this monster is just looking for a way to take over your life and your soul.
I to encourage to keep being active in our chat room. We are not doctors so we can only offer you ideas about what works for others as alternative ideas. But you need to seek out your doctor for advice about anything concerhning your treatments and therapies.
Keep your chin up and realize that we all have travelled down the winding path on the same Journey that you have just started. Simply let us know what you need and we will try to be there to support you. We are walking right beside you on slightly different path so if you stumble and fall just reach out your hand and we will pull you back and make sure you keep up with us.
I would like you to invite you to become our newest MS Warriors. As an MS Warrior we never give up and we never give in! If we get knocked down we reach our hands and let other MS Warriors pull us back up to our feet. With the help of other Warriors we fight on relentlessly. Fight on MS Warriors, fight on!
Thanks, In a one way my wife's mother having suffered helps take a lot of the mystery out of the disease, but also having witnessed her progression adds a very real fear - she was an invalid for the last several years. I just have to keep focused on how personal the progression really is and that she did not have the advantage of the drugs we have.
@pmbevac hi and hello from the wet uk. Sorry that you had to move back to the US to be dx. I was dx in uk October 2010 with PPMS, never been offered any drugs, still waiting for one to be approved. In the meantime this chat room supports me as good as any drug sometimes especially if you are on a downer. I hope you have good success with your new drug, keep us all posted as to how you get on, blessings Jimeka
Thanks - that's one thing I don't miss about Yorkshire - the constant damp during the winter. But the Dales more than make up for it the rest of the year! I was thinking today that it's lambing season - miss that. I think in time I would have been diagnosed, the attack happened in July 2014 and we left in Aug 2015. I didn't really pursue it then as we knew we were moving soon and the symptoms had abated. I guess I was kind of in denial that anything serious was wrong.
Sorry there are no drugs to help with PPMS. I pray they have something soon. Blessings, PaulB
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