Needing some input w/symptoms plz
 

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 :hug: 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. :p 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. :cool: 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 :rolleyes:

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. :o 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. :rolleyes: 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. :hug:

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. :hug:

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 :)

:hug:
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.....:holysheep:

Awwwww, sorry, Seara..:( Feel better soon..:hug:

Stinks doesn't it? :( :hug:

Some days I wake up, after a great night's sleep and think I can take on the world. Then about an hour later, bam. I'm hit hard out of the blue, and feel rotten with symptoms.

Some days though I get lucky and I remain symptom free :)

Waking up for me is a new adventure every day.

Seara - I'm sorry. It is so hard to predict what kind of day you are going to have. It gets frustrating. I used to be so dependable and now I am not. I can be fine when I wake up but within a few hours I am not fine. Or, I can wake up in complete spasms, pain, tremors, etc. and then am fine later on it the day.

I am glad you got the referral taken care and have an appointment with the neuro. Jan. 2 is not that far off. Hang in there! You're doing great.

This is where I'm questioning myself on these symptoms. I've heard of others saying exactly what you are about starting off fine then feeling rotten and vice versa. But for some reason, maybe I'm in denial here I don't know, I feel as though I'm a fake.

If by the time I get to the neuro in 3 weeks, and I'm symptom free....how seriously will I be taken??? This is just adding to my anxiety and I'm trying so hard not to let it get to me. Believe it or not, I'm a very stable individual. Of course I have my moments like everyone does, but this is really throwing me for a loop. I'm so afraid they are going to tell me it's psychological. I swear to God it isn't....I know my body, I know my mind. I just don't know if I have the energy to fight for myself if this doc doesn't believe me.

Wow, what a whiner...LOL. Thanks so much for listening and responding to me. Ya'll are phenomenal folks and I know what you all deal with on a daily basis is hard. Please don't think that I am so self absorbed that I don't consider what ya'll are going through. Thank you for being you! Thank you for sharing with me. It means more than ya'll know!

:grouphug:
seara

Ya know...I was just reading about bladder issues. I was assuming because I'm getting older and have had children that my bladder was getting weaker.

For about 5 years now, I can't go a whole night without getting up to go. This summer, I had a couple of instances where I woke myself up with some dampness (started going before I woke up) much to my chagrin. During the day, regardless of how much or little I ingest, my bladder always feels full and like I need to go. Many times there is little there....and it's getting a bit worse. Is this in any way some of your issues with the bladder? Am I having other issues or could this be connected with the symptoms?

Thanks for your help!

xoxox
seara

Definitely, and I was the same way, and fearing for the same as you.

The first neuro I saw basically said I was crazy. =\ I knew my body, and I knew things were not right!

A good neurologist is not going to dismiss it as psychological hun. They're going to do the research and investigation properly. :hug:

Thanks for responding to my whining hehehe. I'm going to try more often to go through my mantra "We always get what we need". Deep breathing....visualization of someplace comfy and pleasurable....it will all work out.

Ok, when I fall off the truck...would someone please help me get back on it??? ;)

Join the club. It is hard not to feel like a fake. I feel that way most days when I use the handicapped placard in my car. But I know my body's not right and hasn't been. (we won't get into my mind. That's ALWAYS been a problem area! :rolleyes::D)

IF the doc says that it could be psychological, jump on the bandwagon and say you'd be HAPPY to go through a psych analysis and/or neuropsychological testing--in addition to proper physical tests too to rule out stuff. Depression doesn't cause a lot of the sx that you're experiencing. So let the shrink analyze away. And if this doc thinks it's all in your head, DO find the energy (come back here and we'll kick your butt into shape so you do it) to go to another doc. It isn't doc shopping, it's looking for someone who listens and takes you seriously.

And the DimpledOne has a point. A good neuro isn't going to dismiss you. Testing should be done to rule out things that are physical. And sure, dealing with the ups and downs of sx such as you're having is going to have an effect on you. Let your doc try to live with sx like that for any length of time and see how he/she feels. At least you have a good doc right now who is concerned.

Sure thang! That's EASY. :Wheel: Have any more simple requests like that? We're good at it. It's why I like being here. Whether it's :mf_swordfight: words I need to get my act together or just plain having a cyber :grouphug: from people who understand, this place is great for support. You can count on us to rally to your aid! :cool:

Bless your heart ((((( Gazelle )))))

Thank you for making me smile and laugh.....I sooooooo needed it!! I will do my utmost best to "keep it simple stupid" ;)

I hear what you and the other wonderful folks are saying. It feels good to know that these thoughts are not just my own in traveling down this dx road. I hate that I second guess myself, my body and my mind through all this. I know danged well that I am NOT making this up, I am NOT looking for attention. Good grief...if I wanted attention it would be for much better things than being sick with MS or any other kind of illness.

Phewww..ok...breathe....I'm good....I'm ok....I've been very well validated by all you nice folks and I've been blessed with ya'll touching my life as you have. I look forward to getting to know you all better...and to be of support to you as well. Many thanks to everyone.


xoxox
seara

Good Grief Charlie Brown.....I jinxed myself today. I had said that I haven't been having migraines with aura for a long time...and what did I get this evening???? Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr :mad::mad::mad:

This was a different kind of aura than I'm used to, so when it happened, before the pain of the migraine, I didn't even realize it was an aura. It wasn't until after taking my migraine med and the pain started to go away that I realized what had happened.

After making a wonderful dinner of goulash for the whole clan (friends and family), I was noticing that my eye sight became very blurry. My eyes change a lot, I'm used to it. But this was a drastic change and it kind of scared me. I didn't say anything to anyone and in about 15 minutes my eyesight was back to normal. It happened in both eyes. As soon as my sight was normal again is when the pain hit me. THUD!!!!! :thud::holysheep:

Well now, that'll learn me....never speak of such things again or they will certainly come around to bite me! :Oops:

seara I always am hesitant to talk about things in fear that if I mention them, they'll become reality. Kinda like walking into my work place last February, saying I'd be back in a month, and then the following day my MRI results came in and that was basically the beginning of the MS diagnosis.

I sure didn't go back to work within the month!

Awwwwww :(

((((( dmplaura ))))) I'm sorry hon. I hope that today....is a good one for you!

:hug::hug:
seara

I guess I have a question about the migraines. Is the change I had in how the migraine came on something I should be concerned about?

For years, I've had 2 very distinctive kinds of migraines.....ones without aura where I can usually get away with taking an otc med and they are effective in quashing the migraine, and ones with aura. The ones with aura come on with flashing colored lights that start off small, grow to take over all of the eye and then go away, but I need a prescription migraine med to help with those kinds.

The one I had last night had the aura of blurred vision in both eyes. No flashing lights and no interruption in vision in either eye. I knew by the magnitude of the pain that I needed my prescription med for it.

Is this something that I need to tell my dr about in that it was different?

Thanks!
seara