I asked in another thread if I could list some symptoms I'm having to get some feedback and it was suggested I begin another thread so it doesn't get lost in the mix. So here goes -

Cognitive thinking - seems to be slowing down greatly. Making decisions is getting harder. Short term memory is really not good. It's hard to find my words when speaking. Typing this out is difficult and I'm having to stop and think...the flow isn't there anymore.

Migraines - I've had a huge spike in having migraines. I used to get them maybe once every month or so, and now I'm getting them weekly and sometimes more than once a week.

Balance/Walking/Standing - Can we just say weebles wobble?? And for some strange reason, the walls keep jumping out in front of me and I'm hitting them head on *sigh* Also feeling my ankles (mostly my left one) seems to be locking (its the only way I can explain it) when I'm walking. That is very painful when I put my foot down and the ankle locks and doesn't move with the motion. I cannot stand straight without wobbling mostly to my left but sometimes to the right. Closing my eyes while standing straight gets me dizzy. Taking a shower is a real treat.

Facial Pain - From the middle of my cheeks (just under the sinuses) down to the middle of my neck, I have been feeling swollen and painful. It feels like I have my mouth stuffed with something and it's pushing my cheeks out and they are sagging with weight. I thought it might be caused by sinus problems, but I'm not having any. There is no sinus pain, no cold, no sinus or ear infection. It's not a searing pins and needles pain....its more like, gosh I don't know how to explain it....

Twitching/Termor - It's not a constant thing, but it happens more times than not. My hands, my fingers, my shoulders, my feet. I also notice that when I'm sitting still, my head is bobbing and no matter how hard I try to control it, I can't. Holding my arms out, my left one droops lower than my right one and is markedly weaker (as is my left leg). When doing the push/pull with my pcp last week, there was considerable weakness in the left side arm/leg and when I had to push or pull, it was very jerky.

A new symptom today is that my tongue is feeling tingling and numbness....that's never happened to me before. (even 7 years ago that didn't happen)

Anywho....would love some feedback as to whether or not any of your symptoms are like that, or if I might be suffering from something other than MS. Thanks for taking the time to read and respond!

seara

All those symptoms could absolutely be caused by MS . . . or they could be something else entirely.

There are approx 100 differential dx for MS:

http://www.neurology.wisc.edu/public...bs/Neuro_2.pdf

You need a referral to a neurologist. If you don't have medical coverage, there's not much you can do though . . .

Cherie

seara you're not alone, MS or not, with these pains. I've suffered with what I called 'migraines' for years now. Over the counter pain relievers don't do a thing to 'relieve' them. I came to eventually be diagnosed in my case with Multiple Sclerosis, but prior to that I was diagnosed with Trigeminal Neuralgia following several visits to a dental specialist. Dentist also diagnosed me with TMJ (tempomandibular joint disorder). (I've had migraines to my mother's knowledge since I was 6 years old.)

End result is a whole ton of pain. I go through periods of 'relief' where the pain is reduced greatly. If only that was the case all the time! The past few days, my left side of my face, from the top of the head, down to the cheek bone and into the cheek, as well as the right side of my tongue and to a lesser degree my right cheek, have felt like a wild fire of burning pain. Behind the burning pain is the dull roar of pressure pain, where it feels like your head is going to burst or is bigger than it actually is. Ugh!

For a long time I thought I had burning mouth syndrome. I quit smoking and the mouth pain calmed down, but never fully went away. Now I've come to accept in my case the burning (that is now worse in my head and face since quitting smoking) is the Trigeminal Neuralgia (affecting me bilaterally) and the MS. I've tried many medications, and for the burning the 1 that happens to work for me is Clonazepam (Klonopin in the US). Wish I didn't have to take it daily, but I'm in pain daily unfortunately. At least for now.

Anyways, I don't know if any of this sounds like what you're experiencing. You mention the neck as well. After I saw the dental specialist (who injected my neck/shoulders with Sarapin) and a chiropractor, that loosened up my muscles and the pain I was experiencing there.

Start small to rule things out that are easier to identify. Xrays and CTs. Full blood work up. If those things check out, then it's on to the bigger investigation... MRI. I'm unsure of your location, but I went through it this way because of medicare coverage (Canada) absorbing the costs of the testing.

Are you able to see any visual signs of changes to your face? You mention sagging with weight. Is that sensation only or can you see a sag? If you can visually see a sag, get to a neuro ASAP.

Good luck to you and keep us up to date on your progress.

If you dont have insurance, is there any way that you can get some?

You can probably call a neurologist on your own, make an appointment, and then pay out of pocket for the visit.

Ask your regular doctor if he can recommend a neuro, or if he can have his office call the neuro to set up the appointment for you.

I totally understand the balance issues, I've been having an entertaining time lately trying to not fall flat on my face while Christmas shopping the past week or two. The crowds of people are irritating, and they seem to add to the disorientation and make me feel very very wobbly.

At home, if I'm taking a shower and close my eyes, or if I'm in a room where the lights are turned out, I start to feel like I'm going to fall. My dad has this bad habit of turning off lights in a room as he walks out of the room...with me behind him. I dont think he realizes that makes me dizzy. I leave a lamp on at night in the basement where my bedroom is. My parents are constantly turning it off, because they're energy concious, but I need the light from that lamp to help me with the whole walking into walls or falling face first onto the floor.

Makes me think they're out to get me sometimes

I hope you dont have MS, and that whatever you have is something easily curable.

Can totally relate to the walls jumping out into one's path. For me, it's white walls. Can't tell you how many times I've hit the wall in the bathroom. This was a fun one between PCP, eye doc, and neuro until we realized I have a leison in the area of the brain that interprets vision along with my problems of perceiving exactly where I am in my environment. Gonna paint those walls next year, lol.

A lot of the symptoms sound similar to MS stuff, but could also be something else too. I hope you find answers soon.

Seara - At one time or another I have had all of these with the exception of the migraines.

For the twitching, jerking, tremors, and facial spasms the Neurotin works for me. Remember everyone reacts differently to different meds. The facial spasms have only happened once. After the flare was over, they are not a constant for me. The tremors are fine as long as I don't over do it. The twitching/jerking happens mostly while I am sleeping but show up every now and then to remind me they are still there, just napping. LOL

The cognitive changes have improved some over time. My short term memory is doing better as well as the fact that I have been able to read a book and understand what I am reading as long as it is not too complex. However, I still have some deficits. Some I have accepted (complete lack of visual memory) while others I am trying my best to accept (slow information processing).

Balance/standing/walking - I will always have trouble with. However, it waxes and wanes from day to day. Some days I feel I could run a marathon and others just getting out of bed is a challenge. I never know what the day will bring.

There can be so many different reasons for the symptoms that you are having. The best suggestion I can give is to make a log of these and record them on a daily basis. Include emotional aspects as well as diet. Bring it all with you to your next dr appointment as this is useful information and help determine/sort out what is what.

Thank you everyone so much for your comments and support. I finally got my referral this morning and I see the neuro on Jan 2nd. 8:00am. Now that will be a real treat getting out of the house by 7:30am LOL.

I have started keeping a journal, and the last time I went through this (7 years ago) I had written out a lifetime of issues to give to that neuro. He poo-pooed it as if it meant absolutely nothing. It took me a long time to write that out and I felt completely invalidated by him....the big jerk.

This new doc I'm going to is closer to home and is a woman as well. I think I like that idea of having a woman doctor. I hope and pray she is the kind that at least listens....ya know, sometimes all one needs is someone to listen and at the very least validate even if they can't tell you what's going on.

Neurontin.....great stuff. I was on it 7 years ago and it did help a lot. The calves of my legs were very very sore and tight....the neurontin really made it much easier for me to get around. I'm having somewhat of the same problem again with my legs. I was on all kinds of meds 7 years ago....within a year, I was off of everything. That's a story for another time. I have not taken anything since except for some ativan for occasional anxiety, once script of 20 pills usually lasts me a whole year.

I guess I will have to pull out my life story and add the last 7 years to it to bring to the neuro. I don't think we'll touch on everything...but it's helpful to have something to read from as I would never remember it all.

I've tried really hard to make myself think this was all in my head (yeah i know...MS is in your head and spine LOL) but in the mental health way. Oh it's just stress and anxiety. I'm looking for attention. It's not really happening, I'm making it all up. I've tried to ignore it and keep myself busy. (heck, I am busy) I'm not mentally ill. Suffering a bit of depression maybe....but nothing that is controlling my life and it's just bits now and again. I'm a pretty happy go lucky individual for the most part. Even with the stress of no insurance, I'm ok with that....I've always been of the belief that we get what we need. Nothing has changed thus far in that realm.

Ok, I'm rambling now LOL. Thanks again so much for all your words/posts/support and caring. I'm truly blessed.

seara

Oh I hear you, I don't do mornings well at all!

When I went for my IVSM (iv solumedrol for relapses) at 7:30am, I just pulled all nighters. I knew there was no way I was getting out of bed THAT early to go to the place lol.

That's awesome that you got a neurologist that quickly. Please keep us up to date on your progress.

I don't even know if I could ever pull and all nighter....that would be really hard for me right now (of course getting old doesn't help either LOL).

Yes, they did get me in for an appt pretty quickly. I was impressed. But at the same time, I know my doc was very concerned and she pushed for sooner rather than later. She's a good doc


seara

Hmmm....funny....I was actually feeling a bit better yesterday and first thing this morning as well. Now though, I feel sort of "out there" and my face is in pain again. Yesterday the tingling and tremors were pretty well gone, today they are back again. *sigh* I just don't know what to make of all this. I'm having difficulty finding my words again too.....