Confused

[Shiraz]

Hi everyone,

I have reading an gaining information from this forum since August last year and have now felt a little braver to write. My heart goes out to everyone on this forum.

I have had really strange symptoms since May of last year.
June i awoke with pain in my right shoulder. Went to doc had an ultrasound and xray, nothing but inflammation. Doc seems to think it was bursitis. I thought nothing of it at the time. It was recommended that i have a cortisol injection for the pain which i did. This didnt help so i just took pain killers and lived with it. Then i started to feel really fatigued. I just thought id been working too hard. I am an extremelly energetic person and work on my feet running around all day. (not anymore)
August i awoke one morning with intense pain in my hips and pelvic gurdle. Really tightening type pain and muscle pain all over. Really strange. I was off work for a week. Pain was bad. Doc sent me for xray, normal. I persisted and so he sent me off to a Rheumatologist who tested me for HIV, Hepatis, ANA, CK levels, tested for lupus. Also had a full body bone scan. Everything normal except for Very low levels of Vitamin D.

Still not feeling any better, feeling weak and tired. Started taking double amounts of vitamin D supp to increase levels maybe thats why i was feeling tired.

November at work, noticed i would mix up my words a little bit. Slurred a couple of words. I was worried. Started feeling pain in arms, mild tingling, feeling weak.

December i started feeling weaker in the legs
would lean on counters at work for support because i could feel my legs shaking with weakness, and i could feel twitching in my chest area. It felt like a tightning band across
my chest. Painful.

End of Jan saw a neurologist who send me for a mri brain and spine, tested reflexes. Normal. Told me im suffering anxiety. Im not anxious by nature so that comment annoyed me.
Feeling weaker in the legs and had a strange episode one day at work where i would just shake with weakness and by that stage i would absolutely have to sit down wherever i was. Leaning on something didnt work. I was shaking so bad i went to the hospital. My body temp was strange. It was a hot summer day and i was freezing cold. My chest hurt. they did and eeg on heart . Normal.

Found i couldnt work full time on my feet which is weird for me so cut back some hours until i couldnt stand up for more than 2hrs at the most!
Went to Rheumatologist again and explained my symptoms, by that stage id have non stop twitching and burning in my back muscles. she looked at mris again and looked at my spine and just told me she thinks its a nervous system disorder and to watch my weight loss!
That scared me so went off to a second neuro who i showed my mri's to and explained symtoms and he opted to give me some nerve testing. The first one i had was sematosensory evoked potentials on upper and lower both sides of my body. Upper was normal. Lower was abnormal. He didnt know why so he sent me off for further testing in legs. this being Nerve conduction study and i had needle emg in a few muscles, above my knees cause of this bubbling, twitching feeling in my muscles, one of my outer calf muscles, my lower back muscles both sides, left bicep, left hip. All normal. My back is sooo sore. I showed him my neck muscles and shoulder muscles because i have noticed atrophy there. He just tested my strength said it was ok.
Im currently not working because i cant stand on my feet for long. I get shortness of breath, my back muscles are stiff and sore even without any movement. My upper outter arms feel weak. I have no idea if all these weird symptoms are related to an MND. My tongue is cracked and teeth marks on them. I dont see rippling when i stick in out, but it does look strange. I think that will be my next step, to check that out.
Im sorry if i have rambled, but i dont know what else to do. I have had sooo much blood work done. Im not sure if this fits with als. Can als start in your back muscles? Im 36, female. Dont smoke, dont do drugs, drink a glass of red wine most nights.
My energy has completely gone. Im normally soo energetic. Now im just in constant pain with twitching back muscles and popping/bubbling/buzzing senstations in my legs.

If you had read up to here thankyou.

[olly]

hi shiraz.

many with or without a dx will recognise many of those symptoms you have going on.
they are the basic symptoms of hundreds of deseases so no wonder your confused.

i like yourself was sent to a rheumo first and had a bunch of tests done .
but within a month or so when i went back for the results(all ok)i was dragging my left foot and complained of buzzing in my legs.
has someone had a good look at your mri's and explained them to you?
a rheumo is not qualified to give there opinion on a mri or neuro matters.

you need to find a good neuro. with your symptoms being so vague it could take some time for a dx untill a test shows something up or theres further deterioration that is clinical and seen by a neuro not percieved.
dont stress about als or anything,you are at the start of the dx journey and it may turn out to be something completely treatable

[Shiraz]

Hi Caroline,

Thankyou so much for the respone!
I just needed to get it all out when i posted. You are right it could be lots of things. Ive just had enough with the tests for all sorts of things i think it might be. Im not the kind of person that goes to the doctor very often, now going all the time it seems and this plus not working because of my shaking legs has just frustrated me. No no one has explained my mri's to me. Just doing my own research on the net as to how to read them and of course my results that tell me they are ok. Im going to go to a third neuro and show him and start again with him. I was concerned that it was Als because of the 'bubbling feeling' under my muscles in my legs and my constant twitching in my back.
I know it is minor compared to the people on here that have this horrible disease.

Kindest regards Kat