yes, Sally, my local neurologist sent me to a MS spcialist neurologist, some time ago. The both of them, agreed to reevaluate me every 6 months to a year or so. with repeat MRI of brain. I have had about 3, and no new lesions. I had beleaved that they had ruled out MS, so I did not think much about that for about a year. So many other issues has been going on in my neurological state. cerebral aneurysm, and vasculitis and severe neuropathy.
But they can not find the real reason for the neuropathy, so they call it ideopatic.

Not until now, I am bringing the subject of MS again, due to the fact I hav some night episodes, they think might be some kind of seizures, I am going to hav videomonitored EEG next week. I have migrane, and all this together, I have tought perhaps it is MS.
I actually saw this MS doctor twice. So I will wait to see, what the the spinal tap result is. Perhaps we can have it ruled out.

Thank you all for the time and effort of reading my post.

Hi Synnove

I remember you from the aneurysm forum, although that one isn't very active. I had an unruptured aneurysm clipped in 2004, but I was diagnosed with relapsing-remitting MS in 2001. My aneurysm was an incidental finding - thank goodness, because it was just about to blow.

Sorry that you are going through all of this, and I hope you get some answers soon.

Hugs

first of all welcome to this site!

I have severe spasticity as well as neuropathic pain. I also experience that vibrating feeling occasionally in different parts of my body. Feels like a tuning fork to me. It's all part of my wonderful MS journey.

I was on gabapentin (neurontin) for the neuropathic pain, but didn't like the side effects. I have permanent numbness in toes and fingertips, and occasionally it spreads but then retreats back to the permanent sites.

Balance issues, cog fog, bladder/bowel issues, pain, it's all quite a ride.

the lumbar puncture will not always give you additional info...mine didn't.
And make sure you drink lots of liquids before your procedure. Plan to lie flat the rest of the day, and drink hi caffeinated drinks afterwards, like Monster. Helps avoid the dreaded headache. Only get up for bathroom break and meals.

Keep us informed-and keep a symptom journal with dates of onset, as well as questions for your docs. Good luck...hope you get an answer...many of us were given different diagnoses before it was nailed down as MS. It's a disease of excluding others before they decide on MS...

First of all, I do not know if I have MS

to Lynn:
Thanks for your kind post. Yes, that was good luck for you that the aneurysm was notices incidentally, and therfor repaired before it ruptured.
I did not know you also had MS.
I feel a special conection to you. Not so many poeople have cerebral aneurysm and live to talk about it. I guess I just have that feeling due to the fact that I am a nurse, and see patients with ruptures and in ICU etc. My aneurysm was noticed incidental too, due to investigation of visual disturbance and migrane headache.
But any way, it seems like us people with neurological problems, have many issues.
I have had this terrible neuropathy getting worse over a year, last few months terrible.
Doctors have not quite pointed out the reason/cause of the polyneuropathy with parasthesia and autonomic neuropathy. They say it could be the vasculitis I have. But the medicine, is not helping.

To Debbie D:

Thank you so much for your kind reply.
Yes, what is troubling me a lot, is this vibrating feeling. This is the symptom so many doctors, mostly neurologists, have not understood when I explain. IS THERE ANOTER WAY OF explaining this to the doctors??
Even MS doctors, 2 off them, I have explained. Is this so unusual? To me it is scary, and getting more so due to the fact that doctors do not aknowlege it.
So now, I think the spinal tap will hopefully tell us more.

Thanks for your time

There are MANY of us who've experienced this symptom. All I can suggest is to google it or if there is a search engine on this website use it (I am cognitively challenged & can't figure out how to utilize features of site)

DO NOT GIVE UP. No matter if it's MS or some other disorder, list your symptoms in a journal, check in to your body occasionally, and LIVE YOUR LIFE. Try your best to be your own advocate in the doc's office. Be an informed healthcare consumer.

When I was searching for a dx, I was obsessed with finding out what was going on.
There is often something going on...maybe MS, maybe not. Keep track of what's going on...then live as if it's your last day, with bliss and gratitude. I know that when we are feeling so bad it's difficult. But all of us can live life to it's fullest, even when we can't move and can only look around. Others who've been through He77 have taught me that we can make the best of even the worst situations, can learn something from it.

I am not lecturing...just kind of mirror-thinking. We all learn even as we post.

There are many in this world who are worse off than we, yet they make the best of what hand they're dealt. The challenge is to accept the hand and play it to the best of our ability. Sometimes we are successful, and sometimes we aren't. Doctors are well trained in their professions, but we know our bodies best and need to assert with physicians our input.

Keep us up to date as to what is going on and what the docs say...we all ahve experience on our side, which has taught me much here and given me such support in so many ways.

Great post Debbie.

Thank you so much Debbie.
Yes, I afree with you in all that you are saying.
We have to take care of ourselves, both physically and emotionally . We have to live our lives. I will just tell you one littlke thing in that connection:
My husband and I had been invited to a very special celebration overseas, some months ago, and we had been planning. I had planned that for sure, I would be feeling better, have a diagnosis and get medication to "fix me all up"by the time the event should take place.
But that did not happen, and I was feeling worse, and we had to cancel out.
But after that, I felt so bad emotionally, because I have been trying " to live every day to it's fullest", so I felt I had failed, and I felt I had failed my sister( whos's party celebration it was for)
So 2 months later, I booked a trip for 2 weeks. I went home to my "old country"
I spent every day with my beloved family and relatives., I went to all the places that are dear to me. I visited some dear cousin that are terminally sick( She was actually the reason that opened my eyes, and got me out of my miserable old selfpittying person, and I went on the big trip) When I heared about her, I dicided that I must go, and I felt I had to go soon as possible. This cousin has been close to me.
I went to the mountains, I went to the forest,
My doctor back here, had put me on a high dose steroid treatment, and I felt good. I had to be careful though, due to immunsuppresive state
So this two weeks did wonders for me.
And I have had my eyes opened. I enjoy every day, and I will not cancel any event due to my misserable health. I now can look foreward to have my sister coming for Christmas. And I am looking foreward to prepare for Christmas.

Debbie D., so I do agree with all you said
Thank you for your post and information and help I hope you enjoyed my little "story"