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220917 tn?1309784481

Endo App't Tuesday...

Hey, pals~
My World's Most Attentive Neuro has referred me to an endocrinologist with regards to Chronic Fatigue Syndrome, and my first appointment is on this Tuesday.  I am sort of dreading it.  I feel like I'm getting off track.  But I am not a doctor, have not gone to medical school.

At my last appointment with my neuro, who has CFS himself, he decreased my migraine medication, Topamax.  I did something kind of sneaky.  I get goosebump sensations in my right thigh, and to sort of try to get him thinking 'Evoked Potentials' I called his nurse, and reported, that since I decreased the Topamax, the goosebumps and my nystagmus has gotten worse.  His nurse called me and said these goosebumps are called 'paresthesias.'  These can be common when decreasing Topamax.  Nothing about the nystagmus.  I really think paresthesias are common when INCREASING Topamax.  I could be wrong.  It backfired on me.  Serves me right for trying to be tricky and playing dumb!

Anyway, I also did something stupid today.  I have been thinking more and more that CFS might just be me.  SO, I took a hot bath.  HOT.  My right leg has been really crampy and tight, as well as my neck.  And I thought a good soak would feel good.  Wouldn't hurt if I don't really have MS after all.  I usually don't take hot baths because Quix says it is not good for you if you have MS.  But I am slowly becoming convinced I do not.  So, I took one.

I put my feet under the faucet at some points, and the water felt cold, and I thought, Dagnabbit, I'm out of hot water!  Then after several seconds, I realized it was scalding hot.  So, I soaked.  It felt very good.  But after a good long relaxing bath, I tried to get up.  Trouble.  I had a bad tremor in my right hand, and was so weak I could hardly stand up.  I thought for a second I was relaxed, but then I got that old familiar feeling from summer.  My legs were like rubber, particularly my right.

When I managed to get out, I had to drag my right leg to my room to sit down on the bed.  I had the tremor in my hand so much so that I couldn't comb my hair.  I had to use my other hand.  It calmed down after about a half hour, but I had to lie down and take a nap after I dried off.  It shook me up.  I'm willing to believe it was my imagination, but I was so not expecting that, or even thinking about the possibility of having a reaction like that, that I really think it was for real.  I still feel tired from it.  Hours after my nap.  

I wonder if I should talk to the endo about ruling out MS for sure before starting this CFS stuff.  I hate to approach him about it.  I filled out my paperwork for the visit.  I wish I knew what to expect.  Who knows, maybe there's heat intolerance with CFS, too.  I just don't want to waste any more time.

Well, my 7 year old is looking for someone to get him to bed.  More tomorrow, I suppose...No more hot baths for me.  CFS or not.

Take care everyone and thanks as always for reading!

Zilla*
31 Responses
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Avatar universal
Hi, Kristin.

   Thank you so much for your kind words. I am not always a trooper. I am trying so hard. I hate it when I am short with my husband, due to the steroids. Now, HE is a trooper. Believe me, he's taken over all the housework and he has kept it beautifully. (That makes me feel less useless) He dries my Yorkies, after I bathe them. They are in full, thick floor length coats and he hand blow dries them. Never once has suggested cutting them down. (He truly understands how much I love the beauty of their long, flowing hair. I'd rather have that than any material gift he could buy me)

   I am willing to do whatever I need to do to regain my life. A few years ago, there was a commercial on TV. An elderly lady was sitting on the edge of a bed, and she said, "When I wake up in the morning, I have two choices; I can wake up happy, or I can wake up sad. I choose to wake up happy".  I want to be remembered that way.

   I imagine you have checked out the Mayo site for the Charcot-Marie-Tooth disease.
www.mayoclinic.com/health/charcot-marie-tooth-disease/DS00557 - 27k -

   Are you having problems with your feet? Just the tops of mine burn.

   I am anxious to hear what your neuromuscular doc at Mayo thinks when you see him at the end of the month. (Gosh, doesn't it sometimes seem like forever waiting for these appointments?)

   We drove out to the hospital today, where I had my TAH/BSO & A & P repair, and picked up operative reports. I find myself wondering if nerves were damaged during the A & P repair. Dr. k had said she didn't know what nerves they may have affected when they did the A & P repair.

   Kristin, I'm praying for you, too.

   I just KNOW the answers are out there, for all of us.

   Hugs,
   Sheila

  
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Avatar universal
Zil,  is the growth study called an Arginine Stimulation Test or an Insulin Tolerance Test??  I know about both of those because when I first became symptomatic the endos put me through the Arginine test.  They were convinced that when they replaced my supposedly low growth hormone levels with growth hormone and replaced my low tes levels, that I would have this surge in energy.  Did not happen.

Anyway, I would call and ask the name of the test.  You should read about it before hand.  The both tests I mentioned involve giving substances through an IV.  And the ITT runs risks of its own.

Keep in touch
Craig
Helpful - 0
228463 tn?1216761521
Wow - you lucky girl!! You have found another "Very Attentive Doc"!!!   I agree with what everyone has said - so glad he is open to possibilities of what could be causing this for you and is willing to test for everything before he settles on a "I think you have . . . " scenario.  So many of our docs seam to make their mind up about what is going on before we finish the first visit and then just spend our time trying to prove themselves right rather than figuring out our puzzles.

It is very interesting - the whole hypothalmic dysfunction thing, makes me want to research it all!  
Thanks for sharing with us and I will be praying for you and especially for your boss!  She sounds like she needs to be grandfathered in to the weanie roast!  I too cannot stand people that always make everything about them!  She sounds like a weaner to me!!!

Yorkie - You are such a trooper!!  I cannot imagine how hard it must be to be taking all those steroids and getting no relief!   Just shows to me and everyone else that you are willing to do whatever it takes to feel better even if it means causing you to feel jittery on top of everything else for 2 weeks!   Have you looked into Hereditary Motor and Sensory Neuropathy at all?  It is also called Charcot -Marie - Tooth Disease and it is a demyelinating hereditary neurological disease.  I am intrigued by the similarities of the symptoms explained comparing to my own.  I am going to bring it up to neuromuscular doctor at Mayo at end of month.    I hope you get some relief and some answers soon!!  Take care and I will be praying for you!!

Kristin
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Avatar universal
Hi, Zilla.

    Yes, you'd better keep a close eye on how much more blood Dr. H wants. LOL

     Zilla, is there anyone higher up, than your witch of a boss, that you can file a complaint? You just hang in there, don't let her push you into quitting.  You are entitled to the disability insurance.

    Oh my Lord, another one of those "It's all about ME" people!  LYING to her?!! What right did she think she had to know about the baby, befroe you were ready, if ever, to tell anyone? I'm sorry but friendship doesn't come with rights, it comes with privileges. Believe me, she did you a favor by ending that so-called relationship.

   I'm sorry about the baby. (I lost 2, years ago, it's rough.)

   I agree with Quix, I think that gal is psychotic.

   Yes, hypochrondriacs don't believe people are sick, cause they're faking, so everyone's faking. Never could understand the mentality of someone wanting to be sick. Any one of them is welcome to my body.

   Hang in there, Zilla, your day is coming. :)

   Thank you, as well for the encouragement.

   Hugs,
   Sheila
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Avatar universal
YOU had a non-viable pregnancy and a miscarriage and it's all about HER?

I'm totally disgusted.

ess
Helpful - 0
230948 tn?1235844329
uk2
Hi

That was some appointment they really took you to town, something has got to turn up in all that blood work. And after all that maybe your be tested for MS what are evoked potentiels? alot people talk about it on here. Iv had a LP and fluid sent off for testing and blood work at the same time is that what they mean?

Im so sorry you hada miscarry and im so sorry your boss treated you that way how awfull for you and what a cow she was!!! Im surprised your still there you must love your work but it must be hard to be with her and around her all the time. I will pray for a softening of her heart and that things will get easier for you there.

Take care

samantha
Helpful - 0
220917 tn?1309784481
Thanks for your replies!

Gosh, I didn't even think about the vampire angle!  He is very tall, dark and has a non-descript accent!  Very intriguing...I'll have to watch myself!

I am off to work, so I can't very well vent there.  My boss is absolutely awful.  I think she's trying to get me to quit and is creating a hostile work environment so they won't have to pay disability insurance.  My husband and I used to be very good friends with her husband, the surgeon I work for, and her, the office manager.  We used to go out to dinner almost every weekend.  Then I got pregnant and didn't tell her and had started to miscarry at work.  It wasn't a viable pregnancy from the start, so I didn't tell anyone.  She was angry I didn't tell her, and yelled, "You have been LYING to me for WEEKS?  Well, it's a good thing, because you are too OLD to have a baby!"

The receptionist helped me get my coat on and offered to drive me to my doctor's.  Our friendship went downhill from there.  I was so willing to forgive her, knowing it was a shock, and she didn't mean what she said, but she didn't speak to me for weeks.  I emailed her at work, asking her to forgive me for not telling her, even, to break the ice.  Didn't work.  She apologized for saying what she did, but we have never gone out with them again.  And her husband doesn't know what happened.

That was a couple of years ago.  AND her mother is a hypochondriac who used to make her call in sick for her.  So she's not really buying that I'm even sick.  But that's another post.  Must go spend another enjoyable day with her barely speaking to me and not even glancing at me.

Quix thinks she's psychotic, I think!  I think she's right.

Have a great day, all!  I DO hope you feel better, Sheila, and that Dr. K. hurries up.

Thanks for all your encouragement, Mel!

Z*

Helpful - 0
Avatar universal
Hi, Zilla.

  Wow. Dr. H really was thorough, and he sounds like he really wants to help you, and even more importantly, believes he can help you.

  I like the fact that he understands CFS/FM so well, that he can get to the root of it. That's the biggest problem with these diseases, some docs can dx them, but not treat them, and the ones that can't even dx them, don't believe they exist.

   I like the fact that he will recommend an MS evaluation if the 13 vials of blood turn out fine. (Gee, Zilla, 13 vials the day before Halloween? Just kidding ya, girlfriend!:))

  Zilla, it will be worth every cent if he can help you.

Hugs,
Sheila

P.S. No, the infusions didn't help. this is my 11th day on Prednizone and It's not doing much more than making me jumpy. I'm supposed to call Dr. K next week, Wednesday.

   I think it would be the most wonderful thing if he could have you feeling better within one month!!! My prayers are upward even as I type.

   I think you should vent to us about your mean boss now. Nightmares are not good for you, they're just 'stress while you sleep' , and you don't need her causing you any more stress than she already does.
Helpful - 0
271770 tn?1221992084
Oh man!! That's some appointment! I really hope that you will be better in such a short amount of time - I REALLY do :-)

Please do vent if you need to vent. I have and gee I felt better :-)

Take care,
Mel
Helpful - 0
220917 tn?1309784481
I will have to be brief about my appointment with the endo yesterday.  I am tired, as you all are, I'm sure from Halloween.  So many goblins!

I went to see Dr. H and he was very pleasant, a quiet, older gentleman.  We talked at first after his nurse took my history on a new computer program he designed and painstakingly "taught" her to use while I was sitting there.  It was a little tedious.  But he was very patient with her and apologetic to me.  (Forget it, I know this is not going to be brief.)

Anyway, he asked why I was there, and I told him my abbreviated story.  He knows my neurologist.  My WMA Neuro is a patient of his, and also, as it turns out his neighbor.  They have a deep, mutual admiration for each other.  That is very obvious.     He asked me tons of questions, regarding energy level, libido,  sleep quality, things of that nature, and the questionnaire seemed designed for me.  We discussed my family medical history a bit, my social life or lack thereof, due to fatigue.

He wanted to know what testing I had done already and with what results.  I told him about seeing the psychiatrist, and he took a lot of interest in that, wanting to know what exactly the psychiatrist had to say.  He really made me think about what he said exactly and fully.  I remembered that my psychiatrist thought I may have MS or a variant of ALS, a variant that affects the lower limbs in particular.  And I told him about the other psych stuff.  I had a lot of stress and anxiety in my life, but he didn't feel it was causing the periodic paralysis.  He wanted me to have more medical testing done.  Even wanted me to go to the Mayo Clinic if I couldn't get help in Detroit.  The endo typed all this in the program.

SO....we talked about what my neuro found.  Or, rather I talked.  I told him I had hyper reflexes, increased muscle tone in all four limbs, Babinski's response in at least my right foot, and severe weakness in my legs, moderate weakness in my arms.  I told him my NCV/EMG was normal, my PET scan was normal and I'd had normal MRIs.  My blood work had always been normal. ( He thought the Babinski sign was unusual.)

Boy, who thought this was going to be brief?  Then, he wanted to talk.  He told me that he thought I most likely have a problem with my hypothalamus.  I said, Did you just call me a Hippopotamus? No, I'm kidding!  He said that the small gland in your brain that regulates many of your hormones can get out of whack, and it seemed to him, that mine is...out of said whack.  When that happens, it messes up many systems.  Your nervous system is one.  He thinks if this is my problem, he can easily fix it.  He has done the same for my neuro.  

The thing is, it really is the CFS/FM thing, just getting to the cause more, in his opinion.  He feels that Fibromyalgia is not a diagnosis on its own.  (I have been diagnosed with Fibro years ago -- have all the tender spots -- have never been treated for it.)  He feels that hypothalamic dysfunction is the underlying diagnosis for Fibro and CFS, if I understand him correctly.  He didn't come right out and say that.  I am guessing this is what he was getting at.  If this is what my problem is, he thinks I have a severe case of it to give me periodic paralysis.  

He also wanted to know if I had been tested for MS.  I told him not really.  No evoked potentials or anything.  He said there was a question in the back of his mind about it, and if my 13 tubes of blood turn out to be fine, he'll recommend I be tested for MS.  13 tubes!  That's a lot of hormones!  And vitamins, and it looked like he marked off some rheumy blood work, too.  C-reactive protein, I noticed.  He asked if my doc did EBV.  On the 20th, he's going to do a growth stimulating study.  Don't know what that is, but he'll explain it first.  He's out of my network, so it will cost $300.  I really don't think it will be worth the money.  But I can tell my neuro I tried his nice doctor's tests.  Not to say the other blood work won't be valuable.  If this works, he says he can have me feeling better in ONE month.  Can you imagine?

Anyway, I must get to bed.  I have lots to do in the morning.  My mom's taking my boys to the eye doctor because I'm out of sick days, dagnabbit.  I don't like my boss.  She's so mean.  You have no idea.  Some day I may vent.  Until then, I'll settle for having nightmares about her.

Have a good night!  Take care and thanks for reading and all your well wishes!

Zilla*  
Helpful - 0
220917 tn?1309784481
Hey, Sheila~

Feeling any better?  Do you think the time in the hospital helped at all?  The infusion?  When do you see Dr. K again?  

Isn't it crazy how we all understand each others' quest for even horrible diagnoses, just for the sake of finally getting some closure?

Feel well, and get some rest.

Zilla*
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Avatar universal
Hi, Kristin.

   You are so welcome. So glad I wasn't giving you info you already researched.

   My RA is alwawys neg., ANA always elevated, normal sed rate, as well. Often though my WBC is elevated.

   You have the same spine symptoms, as me.

   My lower back hurts, with pressure, as if I have a 300# man strapped to it. (I'd like him to get off now please, as I only weigh 88#s myself. LOL)

    Maybe you could convince your doc to order the HLAB27 test, and an xray of your SI joints, just to see what, if anything is going on there.

   There are many people in a the AS foundation forum very well versed in As and the dx'ing. It';s another one of those tough ones to dx! :( But, it's crucial to get dx'd, before fusion begins.

  I'm glad you haven't lost bowel/bladder function. I feel like my head is always 'up my B@%$*

  I do get that numbness, and it spreads across the front of my thighs. And I have this banded type feeling, as if I am pressing againt bands across my thighs, when I am walking.

   Today, my spine and legs, inner thighs are on fire!!!!

   I hope you don't have AS, but I know, at this point, you would welcome a dx.

   Sheila
Helpful - 0
228463 tn?1216761521
Sheila -  Gosh, thanks so much for all that info!!  My Rheumatoid factor and ANA along with sed rate have all been normal in past tests and that was part of what has me stumped.  To me it "feels" like my spine is inflamed, sensitive (actually oversensitive!) and burning.  You would think with these symptoms that some thing would show inflamation, even my WBC count is normal!

I have identified with your symptoms and the way you describe your spine stinging.  I still have bowel and bladder function but have had episodes of peroneal numbness.  Anyways - I really appreciate the help!  I am looking further into this disease along with another one I have recently found called Hereditary Motor and Sensory Neuropathy.

Zilla - I am anxiously waiting for an update on your visit and the tests he ordered!!  Spill it girlfriend!!

Kristin


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Avatar universal
Zilla, thanks. You are always so kind, even with all you have going on, too.

I'm anxious to hear about your appt., too. (I'm intirgued....13 tubes of blood) but, I will be patient. :)

Hugs,
Sheila
Helpful - 0
271770 tn?1221992084
Aww man heheh I am so intriguiged!! But I get it, so I will wait with breath that is baited :-)

Thanks - it's not for a couple of weeks yet but I'm trying to get it all organised at the moment. Can't wait to hear from ya!

Mel
Helpful - 0
220917 tn?1309784481
My heart just breaks for you, my friend!  We've got to hurry up and start some treatment for you!  I must run now, but will check on you later!

Feel better.  Hang in there!

Hugs, Zilla*
Helpful - 0
220917 tn?1309784481
Hey~
Don't have but a minute right now.  Thanks for your notes.  The visit was VERY interesting to say the least.  He spent two hours asking questions, taking my history, was a very kind older gentle man.He and my neuro are neighbors, as it turns out.  He then took 13 tubes of blood for testing!  How about that for a cliffhanger..

Can I get back to you later?  Thanks so much agagin, and hope you trip goes well, Mel!  Feel better, Sam!

Z*
Helpful - 0
271770 tn?1221992084
Hey there,

No I haven't had all my testing done - my Neuro appointment is 26th Nov and it couldn't come fast enough, as I'm sure we all feel. I wouldn't be surprised if Fibro were part of it but I don't think it explains some of my symptoms. I was never diagnosed with Fibro but was told that was probably what the pains I had during my CFS were.

It's weird. I'm also now planning my class camp to go away to the city for 3 days and I"m a bit worried about it. I may not have much adult/teacher help and if I get suddenly worse than I am... even as I am now it's not a good idea.

Mel

PS - Zilla how'd it go? Can't wait to find out!
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Avatar universal
Hi, Kristin.

   I was mis-dx'd with A.S. in the spring of '06.

   Please make sure your doc understands that a positive HLAB27 test does not mean A.S. My D.O. made that mistake. :(

   Blood Work & the HLA-B27 Test
First, HLA-B27 is a perfectly normal gene found in 8% of the caucasian population. Generally speaking, no more than 2% of people born with this gene will eventually get spondylitis.

Secondly, it is important to note that the HLA-B27 test is not a diagnostic test for AS. Also, the association between AS and HLA-B27 varies in different ethnic and racial groups. It can be a very strong indicator in that over 95% of people in the caucasion population who have AS test HLA-B27 positive. However, only 50% of African American patients with AS possess HLA-B27, and it is close to 80% among AS patients from Mediterranean countries.

Since there is no single blood test for AS, laboratory work may not be of much help. A simple ESR (erythrocyte sedimentation rate), also known as sed rate, is commonly an indicator of inflammation. However, less than 70% of people with AS have a raised ESR level.

Finally, there is no association with ankylosing spondylitis and rheumatoid factor (associated with rheumatoid arthritis) and antinuclear antibodies (associated with lupus).

   Have you checked out www.spondylitis.org ? They have a great message board.

   You probably know all of this, so forgive me if I'm telling you something you already know. My brain is lost somewhere......

   Hugs,
   Sheila









Helpful - 0
Avatar universal
Hi, Zilla.

    Believe me, there are experts on CFS that know it is a real disorder. My girlfriend in NY is on disabililty due to CFS.

   No cure, but there is treatment for the symptoms. It's a very frustrating disease, as so many dispute the dx.

   Mel describes it so very well.

   Sadly, I think is another very misunderstood disease.

   I'm having a bad time, thanks for asking. Anxious to talk to Dr. K next week and see, what, is the next step.

   Hugs,
   Sheila
Helpful - 0
230948 tn?1235844329
uk2
Hi

wanted to wish you luck with endro tell him everything that happened today and tell him all what has happened. I cant remember your full story if you have clear MRI and had LP or not you wer on here long before i was.

I also cant take hot baths without getting nerve pain in my ankle my legs go weak and they twitch like mad afterwards but the cold also effects me sets of my cramps and nerve pain.
i also know with CFS and fibromyalgia that you can find it hard to control your body temp so you over heat easily making you feel ill and find it hard to maintain your heat sometimes too.

Iv so far had brain and spine clear MRI and waiting results of LP and EMG and got MRI of pelvis.

Is he goig to check other things too like your pirity glad (cant spell) and hormone levels is not a endro a blood person im not sure?

body

hi

have you had all your testing? i just wonder if at the end of all this ill end up with it being firbro i asked my docotor if that could be true but she said its not a painfull condition its a achy flu like illness that does not have flares of pain like i have!! thats not what iv read or heard from people, its a crushing painfull disabling illness i have been talking to somebody with fibro and ther life is crushed. i have not worked from may and from there till now ill say iv had three maybe four good weeks not all together either the rest have been hell and full of pain and each time i feel im left weaker and weaker and cant get back up im walking with a stick at the moment instead of crutches and im driving short distances again but i need a wheelchair if im to walk far at all and far i mean 30 yards 50 maybe before my legs need a rest and the pain is too much.

anyway i guess its just a waiting game
Helpful - 0
271770 tn?1221992084
Oh man... just reading this list I see so many of my current symptoms on there it's not funny...

So my symptoms during 'CFS' were: fatigue, severe cluster headaches, migraines, muscle/bone pain (esp. at night stopping me sleeping) and not alleviated by rest, dizziness, problems with balance, numbness/tingling in limbs that often wakes me up at night, swollen glands, sore throat, IBS, heart palpatations, chest constrictions, shortness of breath, infrequent tremor in my hands, increasing stiffness of muscles/joints, slight depression, problems with cognitive function (memory, concentration and brain function, fuzzy, word finding problematic), some bladder incontinence problems, very dry mouth.

Hmmm... well I was wrong... this list makes up a lot of what I have now - the only thing is that now I have added to that list! And I thought my long term memory was ok! Pfff... show's how much I know!

Yes I do get pain in my legs, but this was thought to be caused from Fibro when I had CFS. Now I get an incredible amount of pains in my hands and lower arms that comes and goes. It often accompanies my fingers 'cramping up' and going all 'claw-like'.

Apparently I haven't had CFS since late 2005. I have experienced minor relapses of those symptoms since then and now I am in a full blown attack of something. The only difference I can say between now and then is that the fatigue is different. I can't really explain it. I started feeling that same way for a couple of weeks about a month ago but it went away. I am still fatigued and doing things makes me worse but it's not quite the same.

Well this inquiring mind wonders whether I had CFS at all.. and also whether my episode in 1996 (at 13 yo), the 'CFS' and my current episode are all linked. They have all been very similar and I'm worried at the moment because my muscle problem is getting worse again, especially in my legs. I am deteriorating to the point where tasks I do everyday at work (school) - like going up the stairs to the staff room and front office several times a day or walking across the yard - are getting very difficult for me to do. I am starting to walk funny (bit waddly) and I'm concerned I'll end up in a wheel chair again. My legs do kind of swing out a bit, almost from the hip, so that my feet hit the ground properly.

So there you go. I hope you made sense of all that because I don't think I have :-)  Do you have any of those symptoms or experience them in the way I've described??

Mel :-)

Helpful - 0
271770 tn?1221992084
Hey hey :-)

You sound like you're onto a winner in both your doc and your endo, so yay! :-)

Please don't be discouraged - if you ever have any questions or comments at ALL relating to all this stuff, let us know!! We are people who have had CFS or similar symptoms to those you're presenting with and surely that can only help? :-)

My story is a bit skewed - I didn't tell it right evidently. So here is a boiled down version of it all:

At age 13 I suddenly started to become unwell, particularly with fatigue, nausea and severe lower back pain. The lower back pain became so intense that I remember being in agony having to either sit or stand for any period of time. This increase in pain also became accompanied by a pronounced muscle weakness and my feet started dragging on the ground a bit. Eventually it go so bad (after about 8 weeks I guess) that I was hospitalised in my home town for a week and then in the city for a week. My walking got so bad that I couldn't walk - it was like my muscles had forgotten how or had simply seized up and I couldn't get one foot in front of the other.

Please bear in mind that I was 13 and only some things are crystal clear now. After my stay in hospital and MANY tests I found out a couple of small things - minor heart murmur, ovarian cysts etc - but never the overall diagnosis. They simply could not find a reason - at least that's how I remember it. I eventually started getting better but it affected my ability to swim as well - I used to be a competitive swimmer and all of a sudden I just couldn't. It was like my muscles had forgotten how to do that too and I simply didn't have the strength to lift my arms and kick my feet anymore.

Fast forward to 2003 - diagnosed with CFS after a year of symptoms. At the time a DX of CFS fit perfectly. I had had extreme and chronic fatigue for over 6 months, further exacerbated by activity, and had a whole host of other symptoms. As I recall a problem with walking was not one of them - I certainly couldn't walk far but that was due to exhaustion, not due to the same problems as I'd had at 13. I did however have memory problems, which I have again now, so maybe I'm not remembering this correctly. OMG - I just found an old symptom list. God bless my filing system :-)

I will start a new post coz it is LOOOOONG! hehe
Helpful - 0
220917 tn?1309784481
I think it's Siddy (Marcie).  I think her brother has AS.  I bet if you write to her, she can tell you more about it.  Good Luck!

Z*
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1780921 tn?1499301793
Queen Creek, AZ
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