Just Diagnosed..hard time accepting

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hi...
I am dx with RRMS, severe migraines, and a recent EEG showed spikes in my left parietal lobe. I was having periods of zoning out/blank stare....and difficulty finding words.

I am amazed now that I am checking things out....the number of people with MS, seizures, and migraines????????????

I never realized there was a connection.

I do not have a seizure dx....I am to have a 72 hour EEG within the next week. I really do not want to do it though.

I am sorry for all you are going through!

Blessings
 
HI and thanks for responding. I am in the hospital till Sunday so I didn't see your post until now.

I just got my MS disgnosed for sure. Its been a roller coaster ride. I have a very complex history.

But my first EEG showed "something.. a focus..then the 72 hour did not. So they first said no seizures. Now I have had more "episodes" that are confirmed to my neuologist as epilepsy. So dont go by the EEG per se. Some folks just have Seizures in places in the brain where it does not always register on an EEG.

Thanks for your support and blessings. Please stay in touch.
Jan
 
Sorry you are in the hospital. Is it seizure or MS related?

My MS dx was just in Jan. I have chosen LDN for now.

Do you have migraines too?
 
HI Daisy.. I was just DX with RRMS the same day he dx me with epilepsy simple and complex partials. ITs a LOT to take in ya know?

IN hospital after a severe and dangerous reaction to the generic of Trileptal. Because of my kidney problem I waste electrolytes and was losing sodium.

Then yes my MS turend into a excacerbation and had a little crisis in the night at hosp and ended up not being able to walk or pivot at all. Another story.

ITs what to tell my supervisor? And not driving.. yikes.

How are you doing now?

Yes heard of LDN.. any side effects for you?

Jan
 
So sorry to hear all you are going through. It sucks for sure.

I do know what you mean about being overwhelmed. I went to a new neuro in Dec, because my old neuro kept telling me all my symptoms were all migraine related. But, I had never even thought about MS causing my symptoms.

After my neuro exam that first visit, he told me he highly suspected MS....and after all the bloodwork to rule out the mimics, EP, LP, and MRI's, I was Dx in Jan.

Then in Feb I was telling him about periods I had zoning out/blank stare and difficulty finding words....I thought it was probably MS related. He said, lets get an EEG. Well a 20 minute EEG showed spikes in my left parietal lobe.

I don't think he gave me a dx of seizures....he just wants me to have a 3 day EEG at this point.

I still have severe migraines 2-4 per week (but maybe it is seizures), they are very disabling.

Did they find a new medication that will work for you?

I take it, your employer doesn't know your dx?

The only side effect with LDN is vivid dreams....you just remember clear details....I have only been on it for 2 weeks, so no real change in symptoms yet.!

God Bless You
 
Hey I like vivid dreams!! No I have not told my boss.

What exactly did they use to determine your MS dx?? Be careful. A lot of "neuro" things are CHEMICALS causing headaches/migraines from FOODS etc. But in my case I actually have LESIONS ..now 4-5 more just since January after years of the same old 20 or so.

I had given up on thinking it was MS. I didn't care. Gave up on doctors too. But this group is really trying.

Its the seizures I worry about. I do not know if and when I am having most of them.. or didn't know they WERE even a seizure.

I forget.. sometimes which forum I am on for MS or Seizures LOL

I'll have to tell you about my amazing nutritionist. And all he did for me. I just cannot afford him in cash (tho not expensive) AND these evals and specialists.

Lets keep in touch ok?

IF you want I will give you my email. Do they let you on this forum exchange?

Jan
 
Jan - you can through a Private Message if you want. I
 
Jan4you said:
IF you want I will give you my email. Do they let you on this forum exchange?
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It's not OK to post email addresses in the public areas of the site. You can send private messages and exchange email addresses there if you like. If you want to maintain your privacy (keep your email address hidden), you can keep communications confined to the forum's PM system.

To access the PM system, click the Private Messages link under your username at the top right of the page (if you have unread messages pending, the link will say Notifications: # instead) and just create a new PM (see link in the left hand side menu). You can then type in the username for the member that you want to send a message.
 
Ok thanks Bernard. I have been on forums with PMs and we exchanged private messages or email addresses. BUT then some forums canceled it too. So I was just wondering how to contact folks privately here.

Thanks Jan




Bernard said:
It's not OK to post email addresses in the public areas of the site. You can send private messages and exchange email addresses there if you like. If you want to maintain your privacy (keep your email address hidden), you can keep communications confined to the forum's PM system.

To access the PM system, click the Private Messages link under your username at the top right of the page (if you have unread messages pending, the link will say Notifications: # instead) and just create a new PM (see link in the left hand side menu). You can then type in the username for the member that you want to send a message.
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