Symptoms persisting -please help

[Studavey]

Dear All,

Thanks in advance for your time it really is mucj appreciated. I wish all PALS the very best in the toughest of fights.
I posted a wee while back but have been unable to post again on my thread. Thought I'd post an update and ask for some thoughts on symptoms if not too much trouble.
Currently I am suffering from a weak left thigh, constant fasciculations and alot of limbs jerks, a tight/frozen bottom of face, slow slurring of words, generalised fatigue and worst of all an air hunger upon any sort of physical exertion.
I don't really know what to say...im totally at a loss with this and have been off work for almost 5 months. I've seen two neurologists and had an emg with only one abnormality. MRI looked ok and CSF only showed a mono band. I have an abnormal ANCA blood test and transient neutrophenia.
Sorry for the splurge of stuff but this is life destroying. I have a baby due in 5 weeks and my wife and I are tearing our hair out with worry. Both neurologists say it's multiple functional neurological disorders and they are idiopathic, meaning they don't know what's going on but can't join the dots.
My question is really whether any of this sounds like ALS. My worry is my leg weakness and tight lower face causing slurring - I know fascics can come with many diseases so not that fussed about them. Is greatly appreciate input from the knowledgeable and if there are any tests or thoughts of suggestion on the route to go down I'd really be grateful.
All the best
S

 

[Chincoteaguer]

Sorry for your condition. You should put your faith in your neurologist. Folks on this forum collectively know a lot about ALS but are not a substitute for a doctor's visit and diagnosis. If the EMG indicated ILS he/she would have alerted you. Hang in there!

 

[ShiftKicker]

Hi there-

Looking over your extensive posting history, you have been reassured multiple times that while you have something going on, it does not follow a symptom pattern that indicates ALS. I realize you are worried and your symptoms have clearly caused upheaval in your life. Unfortunately an ALS forum can provide you no support.

It was recommended the last time you came here to continue to follow through with your doctors. They had a baseline for your symptoms and can continue to track any changes or increase of symptoms. Sometimes things can take a while to become clear. Are you following up? What are the doctors recommending you do at this time? There was an additional recommendation you visit with a psychiatrist to help you handle your life limiting symptoms and anxiety. This is NOT a dismissal of your symptoms but an indication that what is going on with you is causing issues that require you to gain some tools to deal with it. It is not clear you have done either thing.

Unfortunately (and this still stands from the last time you visited this forum) the folks here really can't help you diagnose yourself. You really do need to keep working with your doctors to search for the source of your symptoms. Again, it's important for you to learn some tools to handle the stress that comes with having worrying symptoms with no diagnosis- please seek help with this. That would be WAY more effective and productive than coming to an ALS forum and asking people to compare symptoms.

 

[KarenNWendyn]

I read through your old thread (and would encourage anyone else responding to the current thread to read the old one).

I can’t see anything new that you’ve posted here that would make a motor neuron disease suddenly more likely. You clearly have something else going on. We are not in a position to diagnose you. We can just state that your presentation does not add up to motor neuron disease. My advice to you is to keep working with your doctors and to let go of MND/ALS. I don’t feel that the people on this forum can do anything more to reassure you.

Good luck and goodbye.

 

[Studavey]

Hi

Thanks to all who responded so quickly. Shiftkicker I certainly did go to see a psychiatrist and got an SSRI which has helped with my anxiety 're my symptoms. I also got Pimozide from the psychiatrist, which took some persuasion let me tell you.
I have also been back to see the neurologist I saw second, paying privately again. I had no signs of clinical weakness, he noted fasciculation and thinning of muscles but unbelievably didn't think the latter was pathological. I'm lost as to where to turn, I really am. I'm terrified of ALS, but also realise that some of my symptoms such as this internal bodily tremor and visible tremor around my jaw along with various weird sensory skin crawling isn't compatible with mnd as far as I can see.
Thanks again for your time I'll keep you updated. Just now all I have as a diagnosis is functional weakness, essential tremor and BFS. A hotch potch of conveniently untreatable things if you ask me, I don't trust the neurologist and that's an issue. My initial anxiety has probably masked what's really going on I'm afraid.
Pretty upset right now and really scared about the baby coming but until I have further insight into my problems this isn't the right forum to further voice my concerns so I'll leave it at that.
Best regards
S

 

[affected]

OK I hear you but you don't realise the difference between what is happening with you and ALS. I know it's frightening, I know you want better answers from doctors.

Any of us would give anything to be where you are - with a bunch of minor symptoms that add up to nothing sinister. "conveniently untreatable" maybe, but not terminal like the untreatable ALS we are dealing with. Please ponder that for a moment.

Thanks for updating us and I truly wish you the best with your new baby coming and hope you can start to focus on life. At the end of the day only you can make each day you get what it is. There really is nothing we can offer here.

 

[Nikki J]

I will just comment functional is not always untreatable. https://m.youtube.com/watch?v=SDRzlGfrDrQ

You state 2 neurologists gave you that diagnosis. You have experts in FND in the UK and it is possible to be referred out of your area if local treatment is unavailable. I told you before. If you disbelieve that diagnosis seeing an expert to rule it in or out would help you either way

 

[ShiftKicker]

I am assuming you are taking Pimozide for its reported possible benefits in people with MND, and which is in early stages of study for its efficacy. If that is the case, the justification is flawed, as you are assuming you have MND. It's a powerful antipsychotic with heavy potential side effects- some of which are intractable disordered and uncontrolled motor issues. Which means, in your insistence to take a drug that may have benefits for some people with ALS, you have possibly created a situation where you could have some real motor issues down the road. As well, it can cause cardiac and liver problems. My neurologist is unconvinced it will even prove to be effective for most cases of ALS. My psychiatrist calls it a "hammer" where a lighter touch is required.

If you are not taking this anti-psychotic for MND issues, my apologies for the warning. I do not want you to find yourself with a movement disorder caused by a drug that may or may not be effective for MND- particularly as you have not been diagnosed with MND.

 

[Bestfriends14]

I'll second what Shiftkicker said. Not only are the side effects of Pimozide brutal (Tardive, drooling, slurring and drunken walking), but it also isn't a drug on open label for anything else but schizophrenia. Not sure why you would be prescribed it unless your psychiatrist suspects you are schizophrenic? Also, the clinical trial for Pimozide is a maximum of 4 mgs a day. Again, unless you are schizophrenic this is absolutely not a drug on open label for anything but schizophrenia. Finally, a psychiatrist wouldn't be prescribing this for ALS, a neurologist would.