From CFS to MS??

[BondyinOz]

I posted this in response to another post, but thought I would post my own thread and see if I can get some advice.

My story:
I'm a 24 y.o. female who has been sick on and off for 11 years. I had an undiagnosed illness when I was 13, which lasted about 10 weeks. The main symptoms were extreme lower back pain which ended up with my not being able to walk and in a wheelchair, fatigue and nausea. They did a barrage of tests and came up with a few little things but nothing major - minor heart murmur, cysts on ovaries etc. I remember going to a neuro but evidently nothing came of it. (Sorry, have memory problems so can't remember everything)

After I suddenly got better I continued to experience odd symptoms off and on for the rest of high school - a feeling of incontinence (constantly feeling the need to go to the toilet), dizziness (bouts of vertigo), constipation and diaroea (Dr thought it was IBS at one point) and especially nausea. Somehow I got through that and made it to University.

In 2002 I started my first year of Law. I soon got Glandular Fever and things went downhill from there. I started experiencing a whole heap of problems and in 2003 I was diagnosed with both Endometriosis and Chronic Fatigue Syndrome. I became so ill that I had to quit work and uni and move back to the country to live with my parents. I went onto a course of Hydralazine and Aldactone and amazingly 6 months later I was well enough to move back to the city, start working full time and studying part time.

That was in 2005 and I was doing pretty well, despite occasional minor relapses, until early this year. Now I did begin my career as a High School Teacher this year, but I have been in stressful situations before so I was immediately suspicious as to why I got so sick. In April I took a plane trip interstate which resulted in (apparent) Labrythitis - I was constantly dizzy, nauseasted and fatigued. I felt like I was constantly on a ship and started experiencing a whole heap of other symptoms. After a while my Dr thought I must have Glandular Fever again and kinda blew me off.

When I started to realise that I had symptoms much like I'd had before I got nervous. I also experienced weird 'visual disturbances' which my Dr thinks may have been seizures. Apparently I don't have Chronic Fatigue Syndrome again but I definitely have problems. (Yeah, like I didn't know that)
My current symptoms are: fatigue, irritability, memory loss, confusion/impaired cognition, forgetting words, mood swings, dizziness/vertigo, headaches/migraines, sweating, 'fevers' (feeling of boiling up but not necessarily having an actual temperature), heart palpitations, anxiety (possible panic attacks), blurred vision, floaters and difficulty hearing/understanding conversations. In the last few weeks I have started to experience numbness and tingling in my hands and feet, except they can sometimes be only a few fingers or toes, not the whole limb. For some reason I get really dizzy and nauseous when I'm in department stores or somewhere with artificial heating.

I've also started noticing I have less ability to hold things - I have started dropping things a lot and also missing my mouth when trying to drink, which normally wouldn't make me wonder but it's happening a lot. In the last week I have also experienced odd pain in my left arm, particularly in my forearm and today it has been weird all day, almost like it's trembling, and in my left leg. This isn't necessarily new, as I was never diagnosed with Fibromyalgia but this was suggested.

I have a dx of Postural Hypotension, Irritable Heart and Fatigue secondary to Nasal Inflammation (Sinusitis/Labrynthitis). I had a CT scan recently and only found cysts in my maxillary sinus. I have had my hearing checked and it's all fine, despite still mishearing people or just not being able to understand them. I have also had my eyes checked and got a higher prescription but all else is ok. Naturally I've had lots of bloods and all normal.
I have an appointment with a neuro on 26th Nov. I'm mainly going to the neuro for the suspected epilepsy (Temporal Lobe Epilepsy) but I have to wonder with my symptoms whether I might have MS? CFS and MS are very similar and after having similar major episodes in 1996, 2002 and 2007 I wonder if it is possible they were all from the same thing.

Thanks for any advice you can give,

Mel :-)

[BondyinOz]

To add to my comment about my arm from yesterday, I feel like my hand wants to curl into itself and close up all the time. I can extend it but when I'm not flexing it, it just kind of starts curlin in. It feels like the muscles in my fingers are aching. I've also noticed a lot more twitching in my muscles today and had more numbness on the top of my foot. It only lasted 5 mins or so and then went away.

I have to admit that I'm not sure how I'll go when I go back to work as a teacher on Monday. I'm kind of working part time (4 days/week) because of the benefits of being a first year permanent teacher, but I'm still expected to be doing work. At least the term will only be 9 weeks long and I get rid of some of my classes before then.

[Heartshome]

BondyinOz, Wow, it sounds like you have a lot of issues going on. I wish I could help, but I'm in the same frustrating zone of not knowing what is wrong. I was interested in your last post, because I too have had the hand curing thing. I wake up in the moring with my hands curled and in a fist with my thumn inside like a baby's. It seems like when I relax to go to sleep, that my hands want to do this and it feels better than if I try to force them to remain open and relaxed. That can't be normal, can it?

[littlelady00]

Hey Mel.. i was reading your post and i believe that a lot of the symptoms you are gettin are from panic attacks.. Two years ago (when i was 17-18) i started having problems with my vision (it would go like a whitish blur, as well as tingling in my lips, constant need to go to the bathroom, burning on my skin etc etc... Turns out i was getting panic attacks out of nowhere... no cause no nothing, however since i was scared of what was happening i ended up getting panic attacks with a cause (from being scared) and then randomly...

you listed the following symptoms in ur message above:

fatigue, irritability, memory loss, confusion/impaired cognition, forgetting words, mood swings, dizziness/vertigo, headaches/migraines, sweating, 'fevers' (feeling of boiling up but not necessarily having an actual temperature), heart palpitations, anxiety (possible panic attacks), blurred vision, floaters and difficulty hearing/understanding conversations. In the last few weeks I have started to experience numbness and tingling in my hands and feet

out of the symptoms you listed above.. i get the following with anxiety: fatigue, memory loss (only when i get bad attacks and it last as long as i'm getting the attacks, confusion, forgetting words, dizziness/vertigo, (i have had headaches and migraines but i'm not sure if that is related to anxiety), sweating, "fevers" my body  feels as if it's burning up but it's not... heart palpitations, blurred vision (was going white and blurry, to the point i coudln't see anything)... and tingling and numbness

i do have anxiety pretty bad but it all happened out of nowhere, i went for mri's and everything becuase i was convinced something was wrong..

another thing you mentioned is when you go into stores, that you're getting some symptoms, that sounds like panic attacks also....

however some of those symptoms does sound like ms too... tingling, mood swings, tired etc... but you should really read up on anxiety attacks, panic disorder and such to make sure that a lot of those symptoms you are having are not as a result of panic attacks.. you'd  be surprised at how it feels like there's something really wrong when it is panic attacks.. it's also better if you found out now that you had panic attacks so that you coulld go to cognitive behavior therapy or some sort of therapy to make it better...

[fishyfish]

Hey there!  Looks like you've been through the wringer!  So sorry to hear of your problems.  I'm glad to hear you're going to see a neuro - that definately sounds like a good idea.  I'd ask him/her to check for MS or MS mimics, get some MRIs and all the workup and see if that could be the issue.  

I don't know much about panic attacks, but I do know a lot about heat intolerance.  If you're getting too hot in stores or the shower or whatnot, that could be to blame.  When I get too hot, I get very dizzy and nauseous and my limbs are really weak and heavy feeling.

Good luck with the neuro - I hope you can find the answers!

Fishyfish

[BondyinOz]

Thank you all for your responses.

Heartshome: That's exactly how my hands feel - like they want to stay curled up because it's more comfortable somehow. It's odd that they should be aching so much because I've been put on 2 x Magnesium tablets twice daily, which is an amazing amount and is supposed to really help muscle cramping. I really dont' know why this is happening.

Littlelady: Thanks for the advice. I have to say that I think you're right about the panic attacks but only that they are a symptom of what is going on, not the cause. Yes, some of my symptoms are only experienced when I have these minor episodes (which are also possibly Temporal Lobe Epilepsy apparently) but all the other ones I've mentioned I have ALL THE TIME.

These are: fatigue, irritability, memory loss, confusion/impaired cognition, forgetting words, mood swings, dizziness/vertigo (although this has settled to only happen in short bursts), headaches/migraines, heart palpitations, and difficulty hearing/understanding conversations. I also have bowel problems - most of the time I suffer from constipation but lately I have been having a really 'irritable' stomach, getting diorrhoea instead. I can also add the tingling/numbness now.

The heart palpitations thing was really scary coz it started happening every day but now it seems to have eased a little bit. I can just be at rest watching TV and all of a sudden it'll do the biggest somersault and then go back to normal, or I'll be resting and it will start racing up of it's own accord without any other real symptom being present.

My memory has been getting consistently worse over the past 2-3 months. I noticed that it was getting bad again (I had this problem in 2002 with that episode) when I was forgetting names of students I had been teaching for over 6 months, when I would sign a note in a student's diary about why they wouldn't be at school the next week and even discuss it with them for several minutes then find that a few minutes later I was asking them to show me the note for next week and why they weren't going to be at school. (Ridiculous, right?!) In the past couple of weeks I've started having 'goldfish-like' moments where I'll have one shoe but be searching for the other. I'll start looking around then see the first shoe and think 'there it is!' then realise that was the first one, so I'd start looking again, turn around and see the first shoe and think 'there is is!' then realise that was the first one.... you get the picture! (This happened about 5 times by the way)

I have also been forgetting things like the reasons I have travelled to the city, ie. to purchase certain items. I went with the specific thought of buying these things and ended up coming home having compleley forgotten that's why I was there. I have also been meaning to plan my class camp to the city, which is in 7 weeks time, these holidays and I have yet to do it because I compleley forgot that was something I had to do. Grrr! I'd only been saying the whole month prior to the holidays that this was when I was going to be planning it.

Oh well, when I see the neuro next month I'm sure I'll get some more answers.

Fishyfish: Thanks a lot for your comments. I think you're right about the whole workup idea. I wanted to get MRIs done (ordered by my Dr here) but so far only one CT scan. I guess my Dr figures I should wait til I see the neuro. I just don't want to be waiting forever.

That is exactly how I feel in stores and in the shower sometimes. I have actually stopped having baths too now because they make me too hot and I feel sick. That's been happening for about 5 years now.

Thank you again for your comments. I will keep you updated.

Mel :-)

[fishyfish]

Hey gal!  You're on the right track.  I'm hopeful you'll get all the answers you seek at your neuro, but be aware, many of us here are still in no-diagnosis-land and sometimes the diagnosis takes years, if at all.  Some people are lucky enough to get their diagnosis fairly quickly, but steel yourself to the possibility that it might be a waiting game.  Some neuros are better than others, and lots of people go through several before the right person.  Take a timeline/history of your symptoms in, copy for you, copy for your neuro to keep.  It'll help jog your memory and keep you on track.

As far as the heat goes, it's one of my worst symptoms.  Hate it hate it hate it.  So glad that the weather has cooled off now.  During the summer, if I go outside I have to use all these ugly cooling packs on my neck and wrists to keep my temp down.  Definately not fashionable, but necessary.  Hot steamy showers are a no-no, as are things like hot tubs or warm pools.  I also get it after cleaning the house - vacuuming and mopping makes me too hot.  Another funny way I get it is after drinking hot drinks too fast (tea or whatever) - I really laid myself out one morning that way. :)

Stay cool, and keep your chin up.  We're here to listen! :)  

Fishyfish

[BondyinOz]

Thanks so much for your suggestions, I really appreciate them. It's so nice to have someone say 'I recognise that you're unwell and that's a shame - it is something and hopefully one day you'll find out what it is', rather than 'Oh gee, it's hard being sick. You'll be fine, I'm sure it's nothing'. Somehow that kind of attitude makes my blood boil! I've been getting that at school by administrators (the top brass) who don't get it! It's infuriating! They think that it will just be Glandular Fever, which it's not, and that it will just disappear and they won't need to deal with it. Grrr. (and, breathe... hehe)
Mel

[fishyfish]

Yes, dismissive people are the pits!  Sorry you're having to deal with them.  Just get better and stop bothering us all the time.  It'd be nice if it were just a matter of wills, huh?  Ahhh...let's all just WILL ourselves better!  I've had enough of feeling wonky.  Close your eyes, now focus... ..FOCUS...... ...KABLAMOH!!!  Normal!!  Woohoo!

Keep smiling...sometimes our sense of humor is the only thing we have to push back the naysayers.

FishyFish

[BondyinOz]

Man, I just got back from the local show and boy do I feel out of it! I'm really glad that I made the effort and actually went, even though it was only for 4 hours, but my legs are aching and I had a really weird feeling go down my right inner thigh when I was changing pants, almost like warm water running down my leg - weird! Never had that before. Don't worry, I did check in case I'd wet myself or something hehe What's with that?

I got the same feeling as I do when I'm warm (particularly in enclosed spaces) - I was in one of the pavillions looking at the cooking and the floor just started moving. I had to keep grabbing onto the display cases to try to steady myself. At least I wasn't too nauseous with it this time. I know that when it happens I just have to try to focus on something and not move my head around too much so that it settles down.

For all that it's probably going to knock me around for the next couple of days, I'm glad I went - naturally so many of my students were there and they all said hi, even the 'naughty' ones, when they could have easily ignored me :-)

[GOLOKA]

Hey, I think I have the same thing. I am going to setup a app with a nuro. I get vision change, fatigue, lymph pain, not feeling well, muscle aches, dizzy 100% of the time, I can't function/

If I am watching tv or doing anything, and if I look at something, the vision turns double . Stiff neck, and much more.

I can't seem to keep my balance together.

Does this sound like MS?

Ben

[BondyinOz]

I'm glad you're going to go to a Neuro. Yeah, it really does sound like what I have. I've picked up a few new symptoms in the past few weeks including muscle twitching, esp. at night, and muscle soreness/stiffness.

My balance is iffy too and can just go off kilter at any time without warning, but isn't like full on vertigo I don't think.

I think those symptoms could be a whole heap of things - when you go to the Neuro definitely tell me what happens!

Mel

[JoJoGranny]

Sounds like you have what I have -- conversion disorder.  The good news is you probably do not have epilepsy so you won't have to take that medicine the rest of your life. The bad news is, conversion disorder is a mental illness, and sometimes it can take a lot of therapy to get under control.  If your neurologist diagnoses you with this, accept it, and get help from a psychiatrist and psychologist as soon as possible.  Don't fight the diagnosis.  Part of the disorder is being convinced you have some terrible disease.  Don't get me wrong!  A conversion disorder is real.  Patients with this disorder are NOT making up their symptoms, and they have no control over the pain and symptoms they experience.  Basically, your brain is converting stress or a past trauma into a physical illness.  You have no control over it.  But you can get help, and it will get better.  Good luck!