Hello, I'm back!

[jenn38018]

Hey everyone!  I just wanted to let you all know that I am back in town from my vacation.  I can't for the life of me remember if I even to anyone I was going on vacation!  If I neglected to, I am sorry.  I didn't mean to make anyone feel like I wasn't responding to them.  We did have a nice long weekend, and I am now beat!  My family and I went to Pensacola Beach, FL to watch the Blue Angels airshow.  It was really nice.

I did have a new symptom pop up while I was down there.  I kept getting ringing in my ears and my hearing would go in and out.  At first I thought it was from the sound of the waves, but then it persisted even when indoors and away from the beach.  I also had lots of vertigo throughout the weekend, and my wrapping sensation around my waist was kickin in high gear.  I finally came up with a very accurate description for it.  It feels like a painless contraction that occurs repetitively back to back.  I started getting them in my buttocks, thigh, and back as well.  Ofcourse, my usual symptoms were a little intensified because I was spending so much time outside in the hot sun.  It was worth it though.  My kids had a blast, and I love nothing more than seeing them happy.

I see that the forum has been busy since I have been gone.  I look forward to catching up with everyone tomorrow.  It is late tonight, and I have to be up for class by 6am,so I better sign off for now.  I will talk to you all soon!

Jenn

[uk2]

Hi,
reading that post was just like reading mine!! these last few months for me too have been awfull and just when you feel ok something else comes along!!

I could cope with the minor sx but the muscle spasm are awfull. I dont want to go to bed at night because of the other night when i had the flashes of white light and electric type pains and spasms plus the silance makes the ringing seem so loud in my ears, thank God i had a good night last night. Sorry you have been having a rough time and i know how frustrating it can be not being active anymore. Lets hope we all get some answers soon.
And your post is fine i understood it. How hot is it where you are?  We are having a cool summer in the uk Thank God for that i dont know how i would cope with any heat plus we dont have air conditioning over here!!
Same to you im not at all knowledgeable but i dont mind you posting to vent. There are some amazing people on here that give there time like quix and others and just hearing from others with simular sx and dx helps so much.

Take Care

[frann]

Hi,
It seems we are both new to this forum & we are both going through many of the same symptoms. It is so good to meet others who truly understand... m family & close friends try but i guess it is hard for them too... they feel the loss of the person you once were... right? so in my case i try not to upset them & this forum truly helps me... God bless all of you.
Tomorrow is the my appointment with the neuro whose specialty is cognitive issues... i am working on my timline to bring to him... i trust it will be helpful... even though the pain, fatigue, numbness, tingling,etc. is difficult... i am so frustrated with the cognitive loss... it has brought me to tears when i can't get my thoughts or words together...so i am hoping he will be able to help me.

Once again, nice chatting... looking forward to hearing from as many new friends willing to chat.

God bless
Frann

[doni54]

Yes this site has been wonderful.  I am so glad I have found all of you.

I have been having an awful time of it for about three months now.  Symptoms don't go away they just seem to get worse, especially when I get over tired or hot.  

Felt a little better yesterday so thought it would be okay to ride my lawnmower and cut a little grass since the rest of the family was busy.  Didn't manage to get through before it got hot so I'm paying for it today.  Right ear not working except for the loud ringing, arms and legs not wanting to work, so weak I just want to do nothing, severe case of brain fuzz, that awful itching burning in my hands and feet.  I should have known better, but sometimes I get so very tired of not being the active person I used to be, that I just have to take action and do something.

I hope to get to know everyone better and to let you all know that I'm not very knowledgable about all this, but if anyone ever needs someone to vent to I will be here for you.

Please forgive me if this post is not very coherant, the brain fuzz is winning today!! ha  

God Bless
Doni

[uk2]

Hi
Not sure you posted me as well as jenn not used to this posting system yet and get confused (though that does not take much).
Wow 15 years thats a long time poor you. Iv been having mild symptoms since the birth of my second child in 2000 so about seven years. But the bouts have got worse and this last one i cant seem to move past and have other new symptoms coming and going alot at the moment. Im waiting a dx and a mri the consultant was looking for inflammation of the central nervous system, i am just waitng for that.

Hope you start a dx soon and get some answers like you i am new to this site it is wonderfull to talk to people about things and not think im mad!!

God Bless

[uk2]

Thanks for your post.

I cant afford a chrio at the moment i stopped mine soon after she wrote to my doctor and asked me to be refered to a neurologist. The NHS does not supplie chrio only PT which i could ask for and might.

My friend uses a ten machine and says it helps her muscles alot.

Hope Your Well.

[T-lynn]

I have a chiropractor doing it.I suppose I could of ask my GP to order it through physical therapy,they do it there also on patients.

It has helped lesson the spasms,especially the ones that were pulling across the joints.

I am gonna talk to my GP about getting it cleared through my insurances for a tens unit.it can basically do the same thing.

[doni54]

Thanks Jenn.  I am in Alabama about 40 miles east of Birmingham.  Birmingham has some of the best drs and hospitals in the State so I have been on the net searching out a neuro that does specialize in MS.  My son's best friend is a doctor's son and he is going to talk to the Doc and find out if he knows anyone or if he could help me find someone.

I am like you,  if my problems are not MS I just don't know what they could be.  I have researched RA, Fibromy, Lupus, and a dozen others to try to find out myself what was happening to me.  Nothing has matched so closely to my symptoms but MS.  I really don't want it to be MS, but I am determined to find out what is wrong with me this time.  I have visited Dr after Dr for the past 7 or 8 years, when I would be having some of these symptoms, and always got blood test and was then told there was nothing wrong with me.  I went week before last and again the GP sent off blood for blood tests, she was on vacation last week, so I haven't found out the results.  

Good luck to you also and I am really glad I found all of you on this forum.  It is so uplifting to know I have people to talk to who won't think I'm crazy or a hypochondriac.  

Doni

[jenn38018]

I apologize.  I accidentally overlooked your posting on this thread!  15 years of symptoms, wow!  I can't believe you haven't gone to the doctor to get a diagnosis before now.  It is funny how the light bulb goes off when you start learning about MS.  You start connecting all of your symptoms and realize that they match MS so much.  That is what happened to me.  Now I am so convinced that is what I have, I don't know what I will do if it turns out I have something different.  The alternative is looking into lupus, and I really don't want to even think about that right now.  I should find out some results on the 1st.  

Where do you live, if you don't mind me asking?  You really need to find a neurologist that specializes in MS in your area.  If you can begin the process with a doctor like that, your road to diagnosis may not be as bumpy as mine has been.  I made the mistake of just going to whatever doctor my rheumatologist referred me to the first two times.  This time I am seeing someone that I found through researching all of the available neuros in my area.  What a difference!  Whatever you do, please do get checked out.  Those are not symptoms to take lightly.  Good luck to you, and let us know when you do see a doc.  

Jenn

[uk2]

Hi,
Yes the medical system over here is not great unless you go private which is alot of money. I am frustated that they dont do any test in the mean time while waiting for a mri. My GP is great she has tried to push my consultant all the way!!
Had a bad night last night got woken up by white flashes in my eyes and painfull electric type pain in my legs and body i think i must of got to hot as this makes my symptoms worse. My right eye is blurry with floaties today i feel really odd might go back to the doctors on monday.

Have a great weekend eveyone.
God Bless.

[jenn38018]

I gorget that the medical system where you live is so different from ours.  I correspond with another person from the UK on here, and she has really struggled with getting approved to have any tests done because of the medical system there.  It could be that they are not doing the contrast because of cost.  It may take them seeing a lesion or two on the first MRI before they will repeat with contrast, I don't know.

It would definitely be in your best interest to see an opthalmologist.  I don't know if you have to be referred their, but my first neurologist I saw four years ago did refer me to one.  I  have continued seeing one throughout the years.  They never found any signs of optic neuritis in my examinations, but he did say I have some problems with my eyes due the my inflammatory disease, whatever that may be.  I also get the film feeling over my eyes, and I always see something like fireflies dancing around me whenever I take a shower. I am sooooo sensitive to light as well.  Just walking outside into the sunlight makes me immediately snap my eyelids shut and not want to open them.  It is physically painful at times.  The nystagmus is something new that has occured with this last relapse.  I never noticed it before, but I was talking to my best friend in the car one day and she asked me if anyone ever told me I had nystagmus.  She is an occupational therapist, so she learned about it in school.  She was sitting in the back seat and I was in the driver's seat.  I turned my head as far as I could and then looked back at her to talk to her.  She said my eyes were bouncing around like crazy, but i couldn't feel it.  Since then I have noticed it myself a couple of times.

I am so glad you have found our growing family here.  I was lucky enough to stumble upon it when it first got up and running, so I have had the pleasure of watching it grow.  Keep in touch and remember, "you are not mad!".  

Jenn

[uk2]

Hi,

In your posting to Pennst8r you mentioned you were getting muscle stimulation for your muscle spasms, how did you get this arranged did your doctor order it?, i would love to ease my muscles my thighs are so tight and in constant spasm (or feel like it) im starting to have hip pain too and wonder if this is because of my muscles?
I know what that fatigues is like my eyes feel heavy and my body wont move i feel drugged!
hope yours clears soon.

[uk2]

Thanks for answering my post, wow you must be worn out doing a course kids and being ill i take my hat off to you.I was in the middle of my nvq3 at work (not sure if you do those there or not) but iv abbanded it now or at least put it on hold till i get back to work(god willing).
The consultant wrote to the doctor after my first visit (before my muscle spasm bout) and said he was looking for inflammation in the central nervous system and had ordered a mri of the spine and head  (four parts). It says in the information leaflet that  came with the appointment letter that if a injection for the scan is needed it will be administered but the letter itself does not say anything about contrast. I am NHS which is free as such we pay through our NI number through our work if that makes sence. There is only one MRI machine for two main towns and there surrounding areas so the wait is months and i think the machine is old?  I dont know if i can ask for contrast? but i might phone and ask the mri unit where its done.
I feel for you and t-lynn the fatiuge is awfull i slept alot yesteday i was so out of it my 5 year old daughter came up to me and slapped me on the head to tell me somebody was at the door felt really bad!! My eyes feel so heavy and my body just wont do anything.
Yes the heat does make my symptoms worse i used to enjoy hot baths and was a real sun worshipper but not no more but lukey this summer has been that hot my ideal temp is not above 70f i can bare that. Iv even had a odd feeling when drinking really hot drinks i get over heated very easily.
The worse symptom at the moment is my right eye which is blurred like a film over it there is also lots of floaters in there, the tight bands that come and go, the odd painfull patchs on my skin i get usually around the tight bands which i cant bare to touch, my balance i look drunk when i walk!! and my nerve pain in my feet pins and needles my left foot is the worse. My limbs fall asleep more and more easily i only have to sit for ten mins and my legs and bottom have gone to sleep same for my hands and feet, the muscle twicthing i can live with but the odd spasm still bother me and my thigh muscles are so tight they hurt  i also get awfull pain in my hips when walking my left is the worse.And the ringing in my ears drives me mad i sleep with a fan on cause in the silant the ringing is so bad.
Anyway iv moaned enough!!  
Its great getting to know you all and being able to compare symptoms and knowing im not going mad!!
Good luck with the mri results and your course and motherhood. and i hope your knee gets better.
P.s do you think my eye is something to worry about the consultant did flash a light in it back in may and said nothing!

[T-lynn]

Glad you are recovering from a well needed vacation.

I am currently fighting fatigue!!!Up a few hours,sleep lots of hours and up a few hours.Its been a struggle to get anything done.

Muscle spasms are starting to relax,been going to chiro and having muscle stimulation done and it has helped.Trying to get off half the meds I'm on.

I really hope you get some clinical answers soon.

[jenn38018]

I am sorry to feel you are fighting fatigue.  I think that is probably the most debilitating part of my disease process.  I feel like a big pot head all of the time (not that ever did pot).  When I get like that, I am not motivated to do anything but sleep.  I know it is getting bad when my four-year old son tells people that all mommy does is sleep.  It is heart-wrenching to hear that from your child and know there is nothing you can do about it.  Just keep getting as much rest and possible, and know that there is light at the end of the tunnel.  You will get to the other side of it soon!  Take care!

Jenn

[jenn38018]

It depends on what is causing the muscle problem.  If the muscle problem is neurologically related, meaning that your nervous system is causing the muscle problems, then it can pick it up.  Other things can cause muscle problems though.  If it is fibromyalgia, there will never be any clinical findings.  All of your tests come back completely normal when you have fibromyalgia, but your symptoms persist and worsen.  This is why I still have trouble believing that I have fibro.  Too many tests (blood tests, bone scans, etc.) have come back abnormal on me for me to think I just have fibro and nothing else (when I say just, I am not making light of the disease.  It is a very painful and debilitating disease.  I mean that I don't think it is to blame for ALL of my problems.).  I don't believe that an MRI is going to image your actual muscle though, if that is what you are asking.  Have you had an EMG done?  If not, you really should.  This can rule out things such as pinched nerves, ALS, and other muscle/nerve problems.  It is somewhat painful, but a very useful test.  Mine came back normal.  The fact that your neuro did not order your MRI with and without contrast concerns me.  From my experience, if a neuro doesn't order contrast on an MRI when they are looking for MS, they are either not taking you seriously, or do not really think MS is to blame for your symptoms.  I had this happen to me a couple of years ago when I had my second MRI.  The way Quix described it to me, the contrast helps them to see the lesions better, determine their shape, and how bright they are.  This can give them a better idea of whether the lesions are MS related and how old or active they are.  I actually had a couple of lesions show up on that MRI, but the neuro did not think they were MS related.  He said they were probably from other normal causes.  Then later I realized that he did not use contrast, so I wonder how well he could determine they were not MS related without it.  I am sitting on pins and needles waiting to find out what last weeks MRI has to say.  I am like you.  I don't want anything to be wrong, but there definitely is.  I told my husband, we are past the point of thinking this is all in my head.  My symptoms are so bad that there is no denying it.  I just want a diagnosis so that I can get treatment and get on with my life.  I am now in nursing school, and I don't want these disabilities to start effecting my ability to complete my degree.  I understand what you mean about not being able to be active with your kids.  I am the same way.  I also miss being able to do things that my friends my age can do.  I am still a young woman (29), and it is embarrissing because I walk and act like an old woman now.  The last time I fell was weekend before last.  I was out with my best friend and was glammed up in a pretty dress, etc.  I ended up on the ground with my knee busted open and she had to take me home.  I have been limping on it ever since.  I think I really messed it up.  I am glad to have people like you to talk to though.  It helps comparing war stories.  Well, I need to get off of here.  I have homework to do before my kids get home from daycare.  Take care and I will talk to you soon.

PS: I wanted to add something to my symptom list I gave you.  I get really bad vertigo, bright spots in my vision, blurred vision, and horrible neck pain/stiffness.  All of these symptoms get worse in the heat.  Do yours worsen in the heat?

Jenn

[doni54]

I have many of the same symtoms as both of you, some of mine started almost 15 years ago.  Muscle contractions, heat tolerance, leg weakness, burning itching in feet and hands, eye problems, ringing ears, are with me everyday.  

Haven't started the process of dx yet, just kept trying to figure out on my own what could be wrong with me since every visit to my GP was useless.  Accidently caught someone on TV talking about symptoms of MS and just shocked me.  Started researching just a little over a week ago and here I am.

I have started work on my timeline, with the help of Quix and Wanna.  I hope both of you have things turn out good, or for you to at least receive some definite answers.  I think not knowing what's wrong is the worse part.  I don't really want to dx with MS, but if that is what's wrong then I would rather know for sure instead of this constant worrying about what is wrong with me.

Be Well
Doni

[uk2]

Wow my sx are so like yours except for my bout of painfull muscle spasms, iv read alot about fibromyalgia it can be a very painfull condition more painfull then rheumatoid arthuritis and harder to control pain wise so iv heard. I did go down that route myself but i found if you have fibro it does not cause problems with memory speech balance and judgement theres a word to discribe these functions but i cant think of it!!
Thank you for discribing the mri process im not sure they use contrast it does not say about that in the letter i wish they would though cause iv heard that makes a difference.I have one booked for the head and spine.
I have all my hopes pinned on this but reading some of the post iv read on here not all the answers show up first time and its a long process, its not that i want something to be wrong but i know there is something wrong it would not be so bad if i can get past this recent bout but i seem to be left with constant fatiuge nerve pain and muscle spasms which go then come back its been like that since may just when i think i might be getting somewhere something new pops up or a old complaint!!
I really need to get back to work and of recent times i have not even been able to be there for my family its now summer holidays and i get do any of the things i used to do with the kids iv always been very active.
Iv posted a time line on here its aabit messy and i think its missing some bits but its hard to remember everything i might use it to take along on my next appointment.

I pray you get some anwers to and this new neuro looks like he may get you these anwers.

p.s if this is a muscle problem and not a nervous system problem will the mri pick muscle problems up?
God Bless

[jenn38018]

I am sorry you have been experiencing some painful symptoms.  I am in a lot of pain, but it is my joints and muscles being sore.  I also get shooting pains throughout my body.  I have been experiencing the symptoms of joint and muscle pain, stiffness, malaise, etc. for about eight years now.  The neurological symptoms started over four years ago immediately after giving birth to my first child.  Those lasted for about three months and then subsided.  I gave birth to my second child two years later and the symptoms came back immediately after.  They were a little more pronounced that time.  They again lasted for about three months and then subsided.  They came back again about three months ago and are much much worse.  I am many new symptoms this time and they are not going away easily like they did the last two times.  Each time I have a spell of symptoms I have visited a different neurologist and received an MRI.  I had my third MRI last week and an EEG day before yesterday.  I will see my neurologist on the 1st to discuss the results.  I was diagnosed with rheumatoid arthritis when I was 21.  I saw three different rheumatologists over the course of five years, and they all agreed with the diagnosis.  My blood work has shown positive ANA with speckled pattern, positive lupus titer, highly elevated rheumatoid factor, positive for past Epstein Barr virus, and elevated sed rate during flare ups for the past eight years.  That along with my symptoms is what caused them to make the diagnosis.  I was put on every kind of treatment you can think of for RA and none of them worked.  Then, a couple of years ago, I decided to switch docs again.  I wasn't getting any answers, and my current doc was throwing around ideas like lupus, schleroderma, sjogren's, etc.  I started seeing a rheumatologist at UT Medical Center and was really pleased with how knowledgeable he was.  He ran more bloodwork on me and decided that I did not have RA, but instead a severe case of fibromyalgia.  I have been seeing him for two years and have been progressively gettting worse.  I was a retail manager about to become a district manager and had to quit my job.  Now that the neurological symptoms are getting so much worse, I am really starting to think I have MS along with fibro or another connective tissue disease.  I have almost all of the classic symptoms of MS:  tingling/numbness, slurring speech and transposing words and letters, muscle contractions and twitches, tremors, mild nystagmus when I look sharply to side, ringing in ears and hearing going in and out, forgetfullness, unexplained mood swings, vibrating/buzzing sensation throughout body, eye pain and sensitivity, feelings of liquid running down legs, cold sensation on legs when in the heat, muscle weakness, and frequent falling.  I am sure there are more I am forgetting, but those are the main ones.  I feel like I now have a neurologist that is going to get me some answers though.  She specializes in MS, and she said that depending on my results, she may do a lumbar puncture and evoked potentials on me.  No other neurologist has even considered doing that until now.  The MRI is a breeze.  My only complaint was that I was bored to death.  If you are having it done on your head and neck, which I hope you are, it will probably take about an hour and a half.  You just lie on this skinny little slide-out platform and they prop your legs up so that they are higher than your head.  They will insert an IV before starting so that they can easily inject the contrasting agent when the time comes.  They will also give you ear plugs to help with the noise of the machine (it is very loud).  If you are having your neck done, they will put this brace thing around your head (doesn't hurt or anything).  Then they slide you into the machine and ask you to stay as still as possible.  It is a tight fit, so if you are clausterphobic, let them know.  They will give you a little button to push or squeeze incase you panic or have an emergency.  Then they start the machine.  It makes a lot of weird noises, but you don't see anything moving.  It is just like you are lying in a tunnel.  About 45 minutes or so into it, they will come back in and inject the contrast.  I didn't feel it.  Some people say they get a little flushed or dizzy with it, but you really shouldn't feel much of anything.  Once it is over they just slide you out and remove your IV.  Nothing to it!  I really hope you get some answers with your MRI.  Don't be discouraged if you don't though.  From what I understand, it is very difficult to pick up the lesions, even with the best MRI machines.  

Now, look who is running on!  Once you get me started there is no stopping me!  Anyway, I hope my history and info has helped you little and not just bored you.  Please keep me informed on how everything goes and let me know if you need anything.  

Jenn

[uk2]

Hi

This site is great dont know how i got by before its so nice reading all your postings and seeing at least some people getting answers.

Have not been diagnosed yet have mri on the 14th of August and back to see the consultant the 5 th september. Consultant told my doctor in a letter he was looking for inflammation in the central nervous system.

I have abit of a mixed bunch of symptoms which i think have been confused since a car crash i had back in nov 06.

The muscle spasm were painfull for me i think as i had a sudden onset of them back in may for one week could not even feed myself they were relentless every few seconds in my arms hands feet legs and face but subsided after medication now they are just now and again but i have been left with weak left leg and very painfull feet and a odd swelling on both feet, iv been off work for six weeks now felt more stronger of recent but the last two days have been bugged by a painfull tight band around my left leg ankles and ribs (oh joy).
Anyway iv gone on abit really sorry.Iv also been having ringing in my eyes but have put that down to my blocked sinuses.And the heat makes my sx more apparent too.

Can i ask how long you have been having symptoms?  have you had a mri and if so what is that like?

  

[jenn38018]

How have you been?  I hope better.  Thanks for popping in and saying hi.  I did have a great vacation, but I am now recovering from it!  Funny how that goes.  Talk to you later!

Jenn

[jenn38018]

I am so glad you posted!  I love meeting new people on this forum.  

It is interesting that you say your muscle contractions hurt at times.  Mine have not been painful at all, just annoying.  They do feel like braxton hicks contractions though!  If I didn't know better, I would say I was pregnant.   I will be glad when I get some answers.  Have you been diagnosed?

Jenn

[T-lynn]

Glad you had a great vacation.

Oh,the wonderful tinnitus.I hope it settles down for ya,then to have vertigo to go with it.

[uk2]

Hi, we have not talked before but hope you had a good vacation.

The wrapping sensation you talk about is just how i would discribe mine and in one of my post i explained my muscle spasms like contractions when pregnant almost like braxtin hicks but when i got them they were every few seconds in waves and so painfull now there just back to now and again at the moment and not painfull any more thenk god. Hope you didnt mind me posting you.

God Bless

[Quixotic1]

Welcome back, Jenn!  You were definitely missed!!!  Q