Hello...this is my first time ever posting or reaching out on an MS forum. I was diagnosed with MS in July 2014 after 14 years of being told it was all in my head, it was hormonal because I'm a woman, etc, etc. Finally an eye Dr ordered an MRI after some abnormal vision tests and after hearing I had to see a urologist because I suddenly began losing control of my bladder. 1 week later, 3 small lesions were found....2 weeks later I had my first bout of optic neuritis in both eyes that would eventually lead to damage of my right eye.
My neuro immediately started me on Tecfidera which seemed to work for about 6 months until I landed in the hospital with a pretty bad flare up and PPML scare. I stopped the Tecfidera for a short time but when I tried to resume I was hit with all the side effects I hadn't really experienced the first time and was not able to continue. My Dr then decided we should try Copaxone as she felt it was more powerful in treating MS. That drug was NOT for me.
I continued to get prgressively worse in my legs/feet (stiffness, weakness, trouble walking, severe pain) and hands/wrists pain and I developed trigeminal neuralgia which was the worse thing I have ever been through, constant loud ringing in my ears that is deafening and maddening at times... so March of this year my neuro decided to try IVIG treatment and said that if this treatment didn't help it may be some other autoimmune disease and I need to see an MS specialist. The Dr also said that she feels like my lesions aren't showing like they should with all my problems (I've also had a spinal that showed few "o" bands). I've been tested for Lyme and Lupus, both negative. The IVIG treatment did not find me any relief and unfortunately I lost my job as an officer manager a month later because I could no longer handle my responsibilities and a month after that, I lost my health insurance. So I have not been able to see my neuro or afford to see a specialist.
I feel like when all my symptoms started 14 years ago that was actually the disease beginning and I was having flare ups, but no one would "hear" me. I honestly think that it may be primary progressive at this point. I don't have much trust in healthcare though and don't feel like when I do get to finally see my neuro again that I can tell her what I think without her making me feel small or kinda dumb. Thats not a good feeling.
I guess my question is, to all primary progressivers, what were the symptoms that led your Dr to the PPMS diagnosis? From all my research and my own decline it all points to PPMS. Even with the "few too many" lesions, I've read that with primary progressive there are fewer lesions.
Any advice or other stories would be greatly appreciated. I do apologize for the length of my post and if anyone was able to get through it....well, thank you.
Mistie
My neuro immediately started me on Tecfidera which seemed to work for about 6 months until I landed in the hospital with a pretty bad flare up and PPML scare. I stopped the Tecfidera for a short time but when I tried to resume I was hit with all the side effects I hadn't really experienced the first time and was not able to continue. My Dr then decided we should try Copaxone as she felt it was more powerful in treating MS. That drug was NOT for me.
I continued to get prgressively worse in my legs/feet (stiffness, weakness, trouble walking, severe pain) and hands/wrists pain and I developed trigeminal neuralgia which was the worse thing I have ever been through, constant loud ringing in my ears that is deafening and maddening at times... so March of this year my neuro decided to try IVIG treatment and said that if this treatment didn't help it may be some other autoimmune disease and I need to see an MS specialist. The Dr also said that she feels like my lesions aren't showing like they should with all my problems (I've also had a spinal that showed few "o" bands). I've been tested for Lyme and Lupus, both negative. The IVIG treatment did not find me any relief and unfortunately I lost my job as an officer manager a month later because I could no longer handle my responsibilities and a month after that, I lost my health insurance. So I have not been able to see my neuro or afford to see a specialist.
I feel like when all my symptoms started 14 years ago that was actually the disease beginning and I was having flare ups, but no one would "hear" me. I honestly think that it may be primary progressive at this point. I don't have much trust in healthcare though and don't feel like when I do get to finally see my neuro again that I can tell her what I think without her making me feel small or kinda dumb. Thats not a good feeling.
I guess my question is, to all primary progressivers, what were the symptoms that led your Dr to the PPMS diagnosis? From all my research and my own decline it all points to PPMS. Even with the "few too many" lesions, I've read that with primary progressive there are fewer lesions.
Any advice or other stories would be greatly appreciated. I do apologize for the length of my post and if anyone was able to get through it....well, thank you.
Mistie
Progressive MS?...
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