muscle weakness/ shaking. 20 year old female concerned about ALS/M.S

[hayz_20]

Hey there,
Last november i had a virus, headaches, aching body, fever the lot. but it subsided. few weeks later i woke up with small swellings under my arms so saw the doc at my uni. he said it was swollen lymph glands and was probably the results of me feeling unwell. few weeks later they reappeared but left them to subside again still feeling poorly. developed a weird feeling at the top of my spine. like wen i relaxed, my muscles would take 10 mins longer to settle down.
then had the MMR jab in december as i hadn't had it when i was a baby, nurse said my glands werent up so i was fine. went home for xmas, felt even worse. nearly fainted in the shower. aches and pains over my body like never before. headaches, bloated stomach the lot. i lost nearly a stone. on new years eve i had to go to a&e cos of pains in my chest that felt like my bones. had ecg and bloodwork. was fine went home.
doc at home done full bloodwork ESR was raised to 119, white blood cell count was slightly low and one of my thyroid levels was high and the other low.; repeated these tests, ESR was at 19 now but thyroid was same. rheumatoid was fine and so was ANA among others.
went back to uni, still felt under the weather and my muscles ached so bad,
felt tired all the time had to have naps. and developed palputations. had ECG and blood work done at uni docs. ECG-normal bloodwork- WBC low, thyroid levels same as b4. Developed aching headache of left side of head- very nasty, and neck. started to get floaters in left eye. left hand tremor, felt like wen i rested my insides were shaking.

[CCF-Neuro-M.D.-PW]

I have looked at the part of your note posted below the question space

You give a long list of symptoms, none of which signifies to me that you have any specific neurological disease. The doctors are correct to be evaluating the thyroid gland carefully as an overactive or underactive thyroid can produce many of your symptoms. At the same time as evaluating for organic disease, your psychological state of mind needs to be addressed also - stress and emotion play a large part in how we feel physically, and you need to address your problem from this angle also

MS or ALS is not proven to occur from an immunization, and a recent large study disproved any connection between MS and the MMR. Waking up with your arm asleep is usually due to sleeping on the nerve causing a transient nerve 'stun'.

Keep following with your neurologist, regular attendance will also help your anxiety about any new symptoms that develop. Be encouraged that no disease has been identified - it is more likely that you are healthy

Good luck

[hayz_20]

( continued from my last post....)

also my bones were cracking at every movement. not really painful but not pleasant either, my hands, legs, feet, pelvis, back, chest cracked and popped. awful.
Since returning home from uni this summer i have also developed:

-frequent bowel movements
-stiff /weak neck  -feels an effort to keep head up some days
-trouble sleeping
-ears can hear cracking sounds
-can hear heartbeat easily through whole body
-more floaters in my eyes, not just in the light
- right side of face around the eye, cheekbone and nose feels almost numb
-hair has become very thin, brittle
-grumbling sounds in stomach thats not from being hungry!
-left wrist inparticular is cracking very badly as are fingers
-odd pains bottom of back/pelvis
-nose feels stuffy
-throat feels blocked sometimes, like sum pressure is being applied
-muscle twitches in legs
-feeling like i'm about to be sick, which goes away after a few mins.
-both hands/arms have a slight tremor (noticed by the doctor)
-cries a lot more at silly things/emotional
-loss of concentration/have to think harder of what to say next, what word to type next
-skin has become thinner, can see veins and sticky out bones alot easier. head feels so boney!
-some days i have felt like i am tipsy from drink, nearly bumping into things, little unsteady on my feet and not really with it in general

(doctor referred me to a consultant after doing more tests which showed all blood levels normal, even thyroid. WBC still slightly low.
]in the last couple of weeks i have also been very scared as firstly my left knee felt very weak and shaky, then a couple of times i have woke up and my left arm has felt lifeless. i had feelin but no control for a few minutes? also had pins and needles badly one of which last for a day. both legs have now started to feel weak and very shakey even at rest. both arms have also become weak and shaky after lifting shopping bags they seem to tremble for at least a day afterwards its very scary :( 2 days ago out of nowhere my left arm at the top had shooting pains which subsided. morning after it feels very week even upto my fingers as does my right. both legs and now both arms don't feel at full power whatsoever. When i bend down to pick something up i can feel my legs wobble slightly. Another odd thing is that i occasionally get a buzzing feeling the sole of my left foot.

please help me, and ideas or guidance would be great. i have seen a consultant who has done ANA blood tests and thyroid antibody tests. i am going for a neck ultrasound in 2 days. a gland in the left sife of my neck has been enlarged for a good few months now. get the results in 2 weeks. Because of my muscles weakness and brain dysfunctions I am very worried its linked to M.S/ALS etc Any thoughts please on what any of my symptoms suggest. especially from the doctor :)

best wishes every1,
a very worried 20 year old female

[ljilja]

Dear Everyl,
few years ago I felt like you after Subacute-thyroiditis.
I developed elevated Epstein-Barr virus and Mononucleosis,that resulted in
Chronic Fatigue Syndrome.
Please,ask your doctor to test you for Mono and EBV as well as Cox  -Sacci and Ecco viruses.

I started low doze of Synthroid for  hypothyroid .My TSH level was 4,5 -border line that some endocrin.md thought is  still normal range, but another respectfull endocrin.adviced me to start small doze of Synthroid -hormon.
I changed my life style:
stayed at home ,rested,took Flax oil-most important sweat out toxins daily ,but slowely also ,intestinal empting daily is the must.After couple of months I stopped shaking and had more energy.
Still,after 4 years I have to pace myself,
please ask to be tested  for Mono and EBV-to rule out.
and if it is positive,buy books on Chronic Fatigue Syndrom (syndrome)-self help.
Best wishes,
Ljilja

[hayz_20]

ljilja...

Thanks for your comments

I have recently come back from a consultant at the hospital who sent me for the thyroid ultrasound and the blood tests, ultrasound is normal, ANA negative, thyroid ANA negative thyroid levels normal T4 andT3 although i didnt see the exact figures so they could be borderline for all i know! infact i think one of them was perhaps 4.5?
basically due to my symptoms he has diagnosed me with Fibromylagia (fibromyalgia). Although he hasnt said anymore bout doing anymoer tests bearing in mind the above tests is all theyve done. also im concerned as for a good number of months now my White Cell count has been on the low side. last count at the docs a few weeks ago was 2.5 i think which personally considering the normal level is 4 and above, is quite a low sustained level? i also said how my hair was dramatically thinning which is really startin to knock my confidence and stress me out more, depress me. but he shurgged it off as unlikely to be related to the Fibro thing but didnt say any more on the subject. i dont know if im being fobbed off as it were, or if im almost lookin for sumthin to be wrong with me? but my symptoms arent subsiding. I have an appointment in a couple weeks to see local gp to ask about my WBC and thinning hair although he is a bit useless.
Ive gotta go back and see consultant in december for thyroid tests again to keep check but at this rate i feel like im goin mad. and bald but i dont know wot else i can do really?

i think i was tested for Espstein barr virus end of last year which came back negative


im just at a bit of a loose end of wot to do

any more comments would be great. am i being silly?


thanks again

me
xx

[eirunner]

I would like for you to read the comments from the ellyshad thread started on 7/23/05. I am a 52 year old teacher who developed many of the same symptoms that you mention and was told after many tests that I should consider stress as the reason. I do believe that stress and worry makes things worse but when you are sick everyday it causes concern. Please research the things that I mentioned and be assured that you symptoms are real and have a cause. You just need to find the right doctor. I do not know where you are from but consider seeing someone who treats environmental illness caused by toxic buildup. Go to www.refreshinglyfree.com and read my story on the  "about us" page. Also check out the other websites mentioned in the ellyshad thread. Good luck.  Write back if you see anything interesting. I know you will be enlightened even if you have trouble believing.

[hayz_20]

thanks!

i will have a look. i know theres sumthin underlyin woteva it may be because as i said to the doctor i was perfectly healthy, enjoyin life. then sumthin went wrong which i have no idea wot it was. i wasnt stressed. wasnt anythin so sumthin must have brought it on. with me being young, and a student its almost as if they treat wot they see, not wot im telling them. for months at my uni docs they told me it was stress. and them telling me that jus made me stressed out. so ironically they were right in a way?!

silly really.

thanks again

[wendo]

Have you been tested for any infectious diseases, such as HIV?  

***That is only if you have been at risk for it!**

Not in any saying that is what you have, but initial symptoms of early HIV infection are fever, rash, sore throat, enlarged lymph nodes, muscle aches, etc. and in initial infection, the wbc is often low.  
Unless you have been at risk for HIV, don't get tested for it, but I just wanted to point this out as a possible avenue.

[hayz_20]

not that im aware of no! although i dnt think ive been tested

but i dnt see how i could have caught it thou, as i have only had one sexual partner and we used protection everytime. unless theres any other ways of transmitting it i dont know about? i have never used needles either

although im a little worried now lol..

hayz

[wendo]

If you used protection at all times, then you have absolutely nothing to worry about! Only way is unsafe sex, sharing needles, blood transfusion, if you are okay on all three, then you have nothing to worry about my dear!  No resaon for you to worry!

[hayz_20]

thats good to know then! but thankyou for showing an interest in the possilbilities

unlucky for me i still want to know wots wrong. cant say the NHS service here in england is particularly good. most waiting times for outpatient clinics, no matter wot the specialist area can easily be a couple months. and ive been ill since last december now. and all theyve managed to find out, despite my almost regular trips to the G.P is that i 'probably' have fibromylagia (fibromyalgia). however im still convinced its sumthin else even if every1 else around me thinks im over reacting and the doctors know wot theyre doing. and the funny thing is... its not like i WANT there to be sumthin wrong its not for my own benefit that im worried about it.

but im sure most people on here know wot im talkin bout ay

thanks again

[canchaser14]

Check into low b-12 research, and go onto msworldboards.org and check out what the mssociety indicates. You might feel better.
If you like, you can find me there as well..

[hayz_20]

Thanks Carol,

I had kind of passed off the idea of Lyme disease because as far as i was aware, its passed on through tics of somesort? and ive never had a bullseye rash or a rash of any sort really.....

im seeing my doctor this friday and im goin to voice my opinion that im worried about the possibilty of leukaemia and such. as my white blood count has been low for a while now and i seem to be the only once noticing it? (its 2.5 currently) 4 and above is the norm. and after lookin at signs and symptoms of leukemia/lymphoma i have got myself a little worried as i too have a fair few of those symptoms. have had enlarged lymph nodes,  flu like feelins. bad bone pain and crackin and a low WBC. i was hoping to find a forum on this site on which i could ask for advice but ther doesnt seem to be any? unless anybody knows of one please or has any experience/advice on it themselves

is a low WBC continous with fibromylagia (fibromyalgia) or any other suggested conditions/diseases?
I have had a full blood count done a few times. would they have picked up any signs of leukemia from lookin at the white blood cells or do i need to ask for a specialised test?

thankyou again, every1s been so really helpful on here

hayz
x

[hayz_20]

i have looked yes, and i mosr definatley have some of those! unfortunatley ym symptoms seem to be present in a lot of things, e.g thyroid, m.s, neuromuscular conditions. dont know where to start!

by the way, i dont spose you know anything about a low white blood count? ive had this for a while and am asking my doc bout it friday, its been low since december  ithink. latest count was 2.5. which is why im concerned its sumthin serious becos its not rising? e.g leukemia, blood disorders, bone marrow failure. my bones have ached since last december also as well as mu muscles and now my right eye seems to feel odd. i also read it can be caused by autoimmune diseases which i seem to have a lot of symptoms for also. but my ana test came back negative twice?

thanks again, very much appreciated

xxxx

[JoAnnaRF]

As far as I know Fibromyalgia does NOT affect the WBC count. I don't understand why they aren't taking that abnormal lab result more seriously. Have you had your liver, gallbladder and pancreas checked into? Problems with these organs could change your WBC. Just a thought. I sure hope you get some answers soon!
Oh and I love your accent, you can here it in your writing..

[hayz_20]

i have been to docs, and he done me printout of my blood tests. all of which were in normal range apart from my WBC which was 4.2 (normal range 4.5-11) it says and he said its only a mildly low count so hes not too worried. even thou i said this had been sustained for a good 8 months now. i am goin bak to uni in a couple weeks and will see the doc there again and take my test results. he seems friendlier.

results from last test on 6th june-

ANA negative
thyroid function
serum tsh level- normal
serum free t4 level - normal
b12 serum - normal
rbc normal
wbc 4.2 (low}
haematocrit - normal
platlet count normal
lymphocytes normal
monos- normal
neutrophils - normal
eosinophil - normal
basophil normal
ESR normal
serum levels, alkaline phosphate, electrolytes potassium, sodium, creatine, c reactive protein, plasma glucose all normal range exceot for
serum gamma GT level- 10iu/L (normal range 12-43)

however the printout is mixed up and it says abnormal, then not so far away 'liver function test'. ?
so my liver function may be abnormal or sumthin else. i think they are puttin the low wbc down to stress, post viral etc etc. but im not convinced? gotta ring up to see doc again b4 i go bak to uni if i can get in. although i dont know wot he will do. the doc on friday said at my question of, is there any chance its a bone problem, eg leukemia lymphoma. he laughed it off made me feel silly sayin that would show an increase in the WBC and that my lympocytes etc were all normal and i wasnt anemic. so i was like.. ok... any other ideas then or do i have to come up with them all lol. i also said is there still any chance it could be auto-immune becos of my hair thinning/loss thinning skin, inability to put on weight. he jus shook his head. in a few months this would have been goin on a year! and i remembermy b.f sayin last year wen it started, it'll be sorted soon so dnt get too worked up.



so.... here we go again lol dont ya love the health system


thanks

me!

[AlaskaGirl]

Hey
Looks like we're in the same boat. I just haven't been going through it as long as you have.  I am a 28 year old girl with many of your symptoms: general aches and pains, extreme fatigue, stiff neck, twitching muscles, weak muscles, headaches, cracking joints,very slight tremors in both arms, very emotional, inability to concentrate.  But what really got my attention was your mention that you could feel your heartbeat through your body and when you rested you could feel your insides shaking.  I feel the exact same way and it has been freaking me out for a few weeks now.  I can't image dealing with this for months like you have been. This just started the first week of July and I waited about a month before I saw a doctor.  He gave me a thyroid test and Rhuematoid factor test because my main concern was the achiness, fatigue, muscle weaknesss in my arms, and joint pain/popping.  All tests were neg and then I went back 2 weeks later because my other symptoms (insides shaking, tremors, twitching muslces, etc) were popping up.  Then he suggested that I could have obsessive--compulsive disorder.  That just pissed me off.  So later that week I flew south to visit my family and saw a doctor while I was home.  The doc did a bunch of tests and the Epstein-Barr test came back positive.  So I got some sort of steroid shot and some sort of steroid pills to help with my symptoms while I was on my trip.  Very minimal change.  The doc told my if my symptoms didn't go away in 3-4week I needed to see a neurologist. But I'm in Alaska and there isn't a neurologist in this town and I am pissed at my doctor here for not taking me seriously and suggesting obsessive-compulsive disorder.  So I just can't figure out what to do.  Just  thought I should post to let you know someone else feels a lot like you are feeling and my docs aren't cooperating either.  Please keep posting if you figure anything out.

[acrylicsoils]

not a doctor but is it possible if the liver is abnormal that this could effct the WBCs