A newbie here

[jaimec10]

Hello everyone reading this. I am 35yo and am currently undergoing diagnosis. My symptoms started about 5 years ago but my Dr was just treating the symptoms as they came. First it was muscle spasms then drooping right side of face, throat going numb, dizziness, emotional issues and now since Dec unbelievable fatigue and shaking like crazy.

My first neuro thought muscle disease so I've had tons of blood work, emg, ncs, and muscle biopsy. She referred me to U of Michigan neuromuscular. The first main Dr there said Lymes or MS. I had a brain MRI done and it was clean. Lymes test clean. She still says MS tho. The second time I went back I saw the same resident but different main Dr. He didn't even look through my chart and said it's headaches. So he's referring me to the headache neuro section of drs. I wrote them a email stating my feelings and thoughts but he would not even give thought to what his colleague saw on me and planned out.

So I am going to go to the headache Dr like he wants but in the mean time I made a appt at the institute of neurological disease center. I really think they will get to the bottom of it.

Some days I feel horrible about myself because I can't do anything like I used to. My husband tries to act like he cares but it's always been about him. Some of the comments just cut me to the core.

I'm hoping being involved with people who understand how I feel will help me on this horrible journey. Thanks for listening. I can't wait to meet all you.

[from2344]

Hello everyone reading this. I am 35yo and am currently undergoing diagnosis. My symptoms started about 5 years ago but my Dr was just treating the symptoms as they came. First it was muscle spasms then drooping right side of face, throat going numb, dizziness, emotional issues and now since Dec unbelievable fatigue and shaking like crazy.

My first neuro thought muscle disease so I've had tons of blood work, emg, ncs, and muscle biopsy. She referred me to U of Michigan neuromuscular. The first main Dr there said Lymes or MS. I had a brain MRI done and it was clean. Lymes test clean. She still says MS tho. The second time I went back I saw the same resident but different main Dr. He didn't even look through my chart and said it's headaches. So he's referring me to the headache neuro section of drs. I wrote them a email stating my feelings and thoughts but he would not even give thought to what his colleague saw on me and planned out.

So I am going to go to the headache Dr like he wants but in the mean time I made a appt at the institute of neurological disease center. I really think they will get to the bottom of it.

Some days I feel horrible about myself because I can't do anything like I used to. My husband tries to act like he cares but it's always been about him. Some of the comments just cut me to the core.

I'm hoping being involved with people who understand how I feel will help me on this horrible journey. Thanks for listening. I can't wait to meet all you.

Sounds like you have been put through a lot in 5 years I am sorry I hope you can find the answers your looking for and more then anything the support you deserve. Reach out to me anytime I am a good listener

[Seasha]

Hi jaimec10 and welcome!

Going through the diagnostic process is a test in patience and courage for all of us and we understand completely what you're going through. You've come to the right place for much needed support and information as I think we've all faced frustrations of the unknown in our journeys.

I'm sorry it has taken so long to get answers - MS is a tricky disease to diagnose and they want to rule out other disorders, especially if it's not completely evident. Sounds like you've been there and done this and that already!

I hope your appt at the Institute will bring you closer to finding answers. In the meantime, don't be shy about asking questions. We'll try and help you along the way.

Take care

[jaimec10]

Hi Tira and Seasha,
Thanks for the welcome. I was having a bad night last night. I guess im not liking the person I've become. I prided myself on being a great mom and wife and I'm finding it hard to do either right now. On Easter I just started crying for no reason. This is the first time my husband ever saw this and flipped out. I don't quite understand it myself so I can't exactly explain it to him.
I guess ill keep trying everyday to get back close to my new normal. Thanks for listening.

[Perennialz]

Hi Tira and Seasha,
Thanks for the welcome. I was having a bad night last night. I guess im not liking the person I've become. I prided myself on being a great mom and wife and I'm finding it hard to do either right now. On Easter I just started crying for no reason. This is the first time my husband ever saw this and flipped out. I don't quite understand it myself so I can't exactly explain it to him.
I guess ill keep trying everyday to get back close to my new normal. Thanks for listening.

Greetings !
Your feelings of frustration and sadness was almost the same as mine. I constantly had anger and the sense of hopelessness. I knew something wasn't right, but I wasn't sounding off to my PcP about the little things like the tingling of the back, to the weakness on my left side. My GI tract felt funny a couple of times too.
The fatigue only made me more irritated. Before my optic nerve incident I didn't want to eat. Mentally I felt I needed to get away from myself.
By the time I was hospitalized I felt guilt that I had been admitted, and I even blamed myself for what had happened to me. I went from angry to sad overnight.
I still think to myself why on earth I blamed myself for MS.

[Perennialz]

Greetings !
Your feelings of frustration and sadness was almost the same as mine. I constantly had anger and the sense of hopelessness. I knew something wasn't right, but I wasn't sounding off to my PcP about the little things like the tingling of the back, to the weakness on my left side. My GI tract felt funny a couple of times too.
The fatigue only made me more irritated. Before my optic nerve incident I didn't want to eat. Mentally I felt I needed to get away from myself.
By the time I was hospitalized I felt guilt that I had been admitted, and I even blamed myself for what had happened to me. I went from angry to sad overnight.
I still think to myself why on earth I blamed myself for MS.

I forgot to write this part in last night (I forget what a surprise lol)
After speaking to a friend of ours who has been putting up with MS for over 20 years, his, and my thoughts, symptoms, and overall outlook on the "MS Glitch" can be manageable , but definitely a new frontier in our lives.
Things mentally and physically do change. After accepting the things I have to limit myself on, I do feel more at peace with myself.
I hope you find a neurologist who can find you better answers.

[jaimec10]

I forgot to write this part in last night (I forget what a surprise lol)
After speaking to a friend of ours who has been putting up with MS for over 20 years, his, and my thoughts, symptoms, and overall outlook on the "MS Glitch" can be manageable , but definitely a new frontier in our lives.
Things mentally and physically do change. After accepting the things I have to limit myself on, I do feel more at peace with myself.
I hope you find a neurologist who can find you better answers.

Thank u. I was very active. Almost superwoman qualities. Lol. I have been really knocked down. I think that's what's bugging me most. I run a small farm here and some days I can't do anything on it. Like today I was overcome by that drugged sleep where I couldnt wake up for the life of me. I went to sleep at 11 last night woke at 9am this morning passed out at 11am and just woke at 530. Still no energy. This is the worst part of this whole thing.
A couple years ago I went to sleep at 11pm and woke at 6am. It was plenty of sleep. I hope to get back there.

[Perennialz]

Thank u. I was very active. Almost superwoman qualities. Lol. I have been really knocked down. I think that's what's bugging me most. I run a small farm here and some days I can't do anything on it. Like today I was overcome by that drugged sleep where I couldnt wake up for the life of me. I went to sleep at 11 last night woke at 9am this morning passed out at 11am and just woke at 530. Still no energy. This is the worst part of this whole thing.
A couple years ago I went to sleep at 11pm and woke at 6am. It was plenty of sleep. I hope to get back there.

I used to be really active as well. When I got home from work, I'd zip through all the house work like it was nothing. Nothing stopped me lol.

Last summer I have had some major "notice me's" when I felt weak on my left side, tingling spine, feet, and my tolerance to heat was ridiculous.

What's left of my memory is awful now as well. I made some small adjustments to work around MS like doing tasks now in small doses. If I over-do the work now I will overwhelm my body to the point of mental/physical fatigue.

Your symptoms won't go away, but you will be able to get your tasks done. You just can't think the old way anymore, I've learned that if I get upset, or frustrated with those thoughts, a flare-up will soon follow.