Break up

[Thelights]

I have a good feeling my partner is going to break up with me today.

She has been with me since my Weird symptoms started.


I saw the neurologist last week who emphasized NOT motor Neurones disease.
I didn't jump over the moon and my partner didn't like my reaction , she thought I would have been more happy. She is breaking up with me primarily becasue of this. Since I have become ill I lost my first job and now i'm losing my girlfriend.

The neurologist seems to think that It is muscle, auto immune related.

to recap my symptoms - I have cramping, twitching, weakness (not clinical) my thryoid as per sonography inidicates clinical thyroiditis)
I recently had bloods back that say I am now Hypothyroid.I also have jerks and fatigue really easily. elevated c.k 2000 should be between 0-80 i think. Elevates when i physically push myself.

Now the reason I wasn't jumping over the moon is because I am sick and tired of doctors opinions as all of their opinions conflict with one another.

First doc said thyroid
second rhumatologist said he couldnt think of it being anything other than motor neurones disease.
Neuro from the city said he couldnt see anything bilogical taking place and that it is just anxiety
(I took his opinion away for two months until things started getting worse)
another doctor said - your thyroids dying, so there is a good chance its that.

the neuro that i just saw last week I saw him in december for my first consultation.
He noted brisk reflexes but other wise said I was fairly strong.

I saw him last week and enquired as to wether he thought it was my thyroid playing up and he said no, it sounds more muscular/nerve inflammation .

Now I agree with him that he doesn't think that it's thyroid but why is it
that im HYPOTHYROID Yet I have Hyperreflexia Also if i apply pressure or have my leg in an awkard position it starts to shake and the shakes become more pronounced.

I asked him about the potential of PLS and he doesn't think thats the case.

HOW that doesn't make sense. there is hardly anything out there that covers hyperreflexia fasciculations twitching cramps all over . If i was Hyperthyroid then it would make sense .

Now I know i've been an absolute pain in the arse on this forum but can someone shed any light on the situation.

Things just don't add up hence my skepticism, alot of the muscle diseases I read about give dulled reflexes.

thank you

 

[Atsugi]

TheLights. Over the past year, you've been cleared of ALS by two EMGs and what, three neurologists, plus your many posts have never described any symptoms of ALS.

I don't know what's wrong with you. (OCD seems possible.) But I do know this website deals with ALS, which you don't have. Time for you to focus on another website that can support you.

 

[Thelights]

I have only had 1 e.m.g last year august . The fasciculations have changed since then and I have them all over .. even tongue curling fascics .

I am hyper reflexive yet endo yesterday didnt pick it up .. for example if my hair touches the head board on a bed i jump a mile.

Something is really not right .

We are going down the path of muscular issues but most muscular issues dont have any changes to reflexes e.t.c

Ill be having a follow up e.m.g very shortly.

Since then they have been checking for pyruvate carnatine . Endo wants to check my adrenals again. .

My life is a wreck .

 

[Thelights]

My ex and I were even talking marriage potential but everything has become so degraded after feb of last year .
Granted I could have handled this better but my symptoms barrow down too one or two things pls or hyperthyroidism . I cannot think of anything else. If my thyroid was hyper i would accept , but im hypo. Things dont add up

 

[Thelights]

Im a mix of scared, upset because of break up , upset because it ****ed one of my jobs up. I feel awful .. i also feel upset for putting my family and ex through all of this, but I wouldn't if i couldnt logically deduce what it could be via my symptoms ... hell the endo didnt even know what pls is .

 

[Thelights]

One of two things will happen over the next year .
1. I will hold my head in shame and embarrassment because its not what i deduced it to be . I will also write a book emphasising dont jump the gun. My health anxiety with mnd e.t.c

2. It actually is what i think it is and it wont make a difference in the end any way . I will have failed as a man to handle the situation better . I will also dictate a book emphasising , if you think something is wrong listen to your body.

 

[Thelights]

Only very recently have instarted showing abnormal results that are not thyroid related . Cpk of 2000 after excercise.
My right leg is fatigued after excercise and fasciulates more .

 

[Thelights]

I talked to neurologist reception today . Im going in tomorrow for second e.m.g
Im crapping myself. My right leg is weakest part of my body showing the most facics .
He will have a consultation after e.m
G

 

[Thelights]

The rest of my body has massive thumper fascics . Left eye is twitching continuously, jerks all round . Both ulnar nerves in either arm twitch. . Whole nerve not just small area.

In one minute i could have thumpers on the left side of my stomache at the same time my right ulnar is thumping and my thigh keeps popping literally at the same time and in my right foot i have mini little ripple fascics. Even my toungue is going at it.

 

[affected]

Well the good thing is you will find out tomorrow and then believe what you are told.

Still doesn't sound like ALS, so wait it out now and let us know the results.

 

[Thelights]

Ok Thank you for persevering with me for all this time.
(Why did you delete martin marisa's post Atsugi?

I will attach a copy of my NCV/EMG report.

Thankfully it's clear.

After clinical examination , Neurologist noted Brisk reflexes and 2 beat clonus in one of my legs.
He also noted the visible fasciculations rippling on the bottom of my feet.

He mentioned that the fact that my c.k Elevated to 2000 a month ago after exercise and then dropped. Exercised a week ago and my cpk elevated to 600 and then dropped that my symptoms are of a muscular nature and that he has no further Ideas as to what could be the problem.

Now he stabbed me up with the emg in right bicep , tricep calf. He also emg'd my left calf.

My tongue has also been having fascics and the bottom of my right foot is always rippling.... does it matter that I didn't get my tongue e.m.gd?

Can "HYPO thyroid" cause "HYPER thyroid" symptoms?

He told me to start taking vit B2-Riboflavin and couldn't give me much more answers than that.

Other than of course leaving this site, does anybody have any suggestions as to what I do now.
I've gone to the top and I still have no answers other than the fact that I get elevated CPK after exercise and my thyroid is 1. Hypo 2. highly vascular 3. high antibodies and 4. I have slight goiter .

Neuro said I should now follow Endo, who also doesn't believe that my thyroid could be causing these manifestations.

Of course clean e.m.g rules out ALS thankfully, however I can't just spring back into exercise as it is clearly damaging my muscles.
I'm literally lost as I have weakness mainly in my right leg - feels like my foot is rolling in and sprained ankle. Sensory symptoms from fascics in foot , tightness and it feels like a dead foot, but with out numbness if that makes any sense. It's also cramping -
along with all of the other symptoms I have mentioned in previous posts. Even if I smile my face muscles cramp. My jaw is even reflexive in that it snaps shut if some teeth clack together. Jaw and ankle are more "clicky" due to weakness.

I know my scenario pales in comparison to people that have been actually diagnosed, but as you can imagine after a year and a half of symptoms and worry I just want to crack back on. Before all this I was ripped muscular and seeing a gorgeous girl and I along with my symptoms have gone and F'd that up along with putting serious stress on my family members.

I put my hands up and say that I am wrong about obsessing over ALS and I really apologise. I still want an answer as to what the hell is going on.

My apologies to those that I have caused distress and Pi$$ed of people on here.Also Atsugi I do suffer from OCD and it's only after this second emg that I'm starting to believe its not ALS.

Summary: NORMAL STUDY WITH NO NEUROPHYSIOLOGICAL EVIDENCE OF PERIPHERAL NEUROPATHY OR MYOPATHY.

 

[gooseberry]

Lights, I would see a neuromuscular specialist. Bring this report and all uour symptoms written down. Get the office notes for this visit to take with you. You need a neuromuscular person. If your endo will run a vitamin panel it may be worth going there while you wait for other appointments.

 

[Thelights]

Neuro Was a specialist in Multiple sclerosis also previous neuro was in the city of Brisbane Aus .

also your scaring me a bit by saying that. Whats your thoughts ?

 

[Thelights]

Im in a predicament there aswell, if i see another neuro 1. My parents will be pissed and think im still worryimg about motor neurones and if i am going to enter another relationship i need to be withought baggage.

Obv still want to get to the bottom of this.

 

[affected]

You have seen our best unless you went to Prof Rowe down in Sydney.
Hendo knows his game, and so will the other one have.

We only know ALS, so I'm sorry we can't suggest what you do next except keep working with your doctors.

Congratulations on being cleared of ALS once and for all!

gooseberry I know the doctors he has been seeing, they are the bees knees