Als MND panic- please help me!

[pulisa]

I didn’t know about sensorimotor ocd before I looked at STk’s thread. Looks extremely interesting and I’m going to do some reading about it. Xx

It's something which I recognise in myself. There's such a horrible spectrum of stuff you can torment yourself with..I really hope you find some useful information/sources of support xxx

[pulisa]

Thank you for the reply FMP. The irrationality is apparent to me too - sort of at least - but the terror is the thing that is real. This thread is several years old. And so it probably looks like I have been locked in this horrible hole that entire time. In fact i have had - sometimes long - periods of remission. But this relapse is a bad one, and has now been going on for three months. I know I need help. And I know I need to do more to help myself - to combat my self testing, and my damaging thought patterns. But it’s the summer holidays at the moment and I have four children at home….. so actual therapy is off the cards right now because i am very much “on duty” and I don’t want to reveal too much of this problem to them because it would be highly unsettling (I have talked about it to my eldest. Partly because I do think it’s important to be candid about mental health. But she doesn’t SEE it on a day to day basis. And I’d rather keep it that way).

But - that said - coming on here IS the best kind of therapy for me. On here I can voice my fears. Get the faulty thoughts pointed out, and get support. So i remain forever grateful. Xx

It's incredibly hard to manage such a distressing condition when you have 4 young children to entertain on a daily basis. What IS "help" though? Professional therapy undoubtedly but it can't just be conjured up instantly and when juggling the demands of childcare and holiday activities and it has to be with the right person who has a specialised understanding and interest in HA and its challenges.

You do what is best for you, Jojo. You have a very challenging life and if coming on here helps then let us help you if we can? xxx

[jojo2316]

It's incredibly hard to manage such a distressing condition when you have 4 young children to entertain on a daily basis. What IS "help" though? Professional therapy undoubtedly but it can't just be conjured up instantly and when juggling the demands of childcare and holiday activities and it has to be with the right person who has a specialised understanding and interest in HA and its challenges.

You do what is best for you, Jojo. You have a very challenging life and if coming on here helps then let us help you if we can? xxx

Thank you dearest Pulisa - I do and will! And it really is INCREDIBLY helpful. When I have had professional therapy in the past….. I have sung the praises of NMP as the most valuable source of peer support - and it’s there when you need it most, in your darkest moments. The internet may have contributed to my problem (bloody dr google!!) but it also provides much needed support. Xxx

[stk149]

Hi Jojo,

Thanks for your kind words. Definitely look in to sensorimotor OCD and if you can, find a good therapist to treat it. It’s all about desensitising yourself to the fear of ALS and your anxiety symptoms until they have less of a hold on you and resisting reassurance seeking - so much easier said than done! I am starting with my new therapist tomorrow night and hoping the session is productive. I can’t imagine how hard it is with kids - I am single and live at home with my mum and she’s been really supportive but I feel so guilty for causing her to worry about me.

As for coming off sertraline: I just felt like it maybe created a few more additional issues for me while I was on it (developing new fears, bad brain fog etc) and just felt like I didn’t need it anymore as the original fear had went away (which was also ALS related at the time LOL) now I just feel like I’m back to square one. How long ago did you come off it? I joined a forum called Surviving Antidepressants and apparently it’s a very common pattern to experience an intense wave of anxiety 2-4 months after stopping.

X

[jojo2316]

Oh my goodness Stk- that is so interesting. I had felt quite “level” for a while, which is why I decided to wean myself off sertraline. It seemed to be going really well and about 2 months passed and I thought I was out of the woods and then BAM! This wall of anxiety hit me like a freight train. I had no idea this was a thing.
How is your swallowing going? I totally relate to this being an obsession- I’ve had this too

[stk149]

No way! It definitely seems to be a pattern for a lot of people. Are you considering going back on them? I'm not sure what to do, every time I've taken ADs I have relapsed 2-3 months after coming off of them, only once have I been able to stick it out and wait for the dread to pass but it's so difficult. I hate that you're suffering too but it's also quite reassuring to know I'm not the only one that's followed this pattern.

I am still constantly thinking about my swallowing and it's going on 3/4 weeks now, of course the vicious cycle of anxiety now has left me with no appetite and dry mouth which is making it even more difficult. I normally love my food so this just feels so alien to me! Hoping I can get some proper advice from the therapist tomorrow night rather than trying to figure it all out on my own. The most confusing thing for me is that this OCD has stemmed from an anxiety symptom, so I'm stuck trying to figure out if I should treat it as anxiety or treat it as OCD! So frustrating.

[jojo2316]

arent anxiety and ocd two sides of the same coin though? Can’t they be treated in tandem? The most weight I’ve ever lost has been when I am having swallowing phobia. And I love food too! For me at the moment though I’m more concerned about my voice- so I’m not talking much…… which doesn’t have quite the same effect!
I am back on sertraline - I caved. But, so far, it’s not helping. But…… early days I guess. I might handle it differently next time I come off it though….. now I know about the 2 month wall!

[stk149]

Well they can (I think!) but it’s important to make a difference between treating the two. I have found reassurance and distraction helpful for anxiety and panic, but with OCD it is more about allowing the fear to be present in order to desensitise (so not using distraction or thought blocking or reassurance).

Did you find anything in particular helped with the swallowing thing? Because i literally feel like my brain is going to be stuck on it forever :(

And no shame on going back on sertraline if it works! I may end up doing the same myself if this doesn’t get better for me but just hope it helps. I think if you do try to come off them again do it very very slowly, the advice my doctor gave me was shocking in that they told me to take 1 every other day for a week and then stop: far too quick after 3 years of treatment!

[jojo2316]

I am really struggling today. My twitching is pretty bad and last night I lay in the bath crying, while my thigh muscles jumped about all on their own. I know! I’ve been in and out of this hole for four years! So I’m NOT going to ask any of you lovely people to reassure me. You’ve done it already. And heads and walls come to mind!!

So I am going to answer my own post by pasting a great post I found on the BFS forum. It describes pretty much exactly what my neurologist said to me (2 years ago!). If it helps others then that would be wonderful. Lots of love to you all xxx


”Hi everybody,

Got back from the neurologist. First things first. His words, and the most important ones: this is NO ALS.

(I’m going to try to give as much information as he told me but I’m Dutch so hopefully my english is good enough)

The neurologist has been a professor in motor neuron diseases for more than 40 years, so he must know what he’s talking about. He looks a little like Santa Claus, so he must be very good and smart.
Usually an assistant neurologist does the clinical but this time I saw the professor right away. He didn’t see the use of doing another clinical because I had already been diagnosed with BFS.

I gave him a list with all my symptoms (fascics under feet, fascics 24/7 calves and thights, knees, shoulders, hands, back, cheecks. Tickling feelings on hands, shoulders, cheecks, strange feeling in cheeck, crampy hands, vibrating tongue, cramps in cheecks, cramps in legs, arms, vibrations all over, tremor and so on…) He read them and said: “If I read them one by one I don’t find anything that worries me, if I put them all togheter it brings me to BFS and anxiety.�

I explained my fear for bulbar als so he did a clinical in my mouth, tongue and neck. All fine he said. Of course I asked him about tongue fasciculations. He said that’s not the kind he’s looking for. With ALS they look at something else in the tongue, he explained me what they look for. (not going to explain that because otherwise you all end up in front of the mirror and you don’t have als so no reason to explain it). He said the tongue is the most active muscle and the one that’s almost impossible to keep still. So regarding to shaking tongues: no worry = natural.

I also showed him my arm because I thougt there was atrophy. He laughed. “This is no atrophy at all�

So now everything I asked, he replied and said:

1)Where, when and how the fasciculations appear: “doesn’t matter, not important�

2)What about little ones, fine ones. I heard they are more due to ALS: “Huhm, you know more than me, no, that’s nonsense.�

3) Widespread twitches and bulbar diagnosed: “Here you need to use your common sense, if you are twitching all over and it’s due to ALS than a) you would have had clinical issues b) you are at a stage when it would be very clear there is something wrong c) EMG already pointed out d) you wouldn’t be able to speak normally anymore�

4) Does bulbar ALS appear with weird shakes, something in throat, biting on tongue? “Not at all, it’s diffuculties swallowing and speaking. Not saying words wrong but not being able to, as if you were drunk (very early stage) Also bulbar is the quickest one and you will know this immediately. It doesn’t hide, at your stage (7 months) you wouldn’t be able to say anything anymore�

5) I read 6% of ALS come with fascics first, is there a time limit to be sure? “In my 40 years of expierence I have never seen a ALS patients with only fascics as an only symptom� It’s true some people come here with fascics and that’s the only thing they complain about but when we do a clinical we notice that there are other things wrong with them�
6) Do you see clinical abnormalities in every clinical in every stage of ALS? “Yes�

7) Does clean EMG really rule out ALS? “ We don’t need a EMG to RULE out ALS, we need it to CONFIRM ALS. If there is something wrong we definitely see it in the clinical.

8 ) How come in some EMG’s they see fascics and in some not? (this is a technical explanation of the prof and very diffucult for me to say in English but I’l try) “ The EMG is like a kind of eye, and also as big as an eye. So if they put it in one muscle in only sees that part of the muscle (as big as an eye) If you are not twitching there at that moment they won’t see it although you are twitching in different areas. If you happen to twitch there at that moment they see it. With ALS it’s different. The muscle doens’t get impulses of the nerve anymore or badly and shouts outs to the other muscles to reinforce. So they give a little of their strength to it, result: continous twitching, fibs, sharp waves,…

9) I heard a lot about the CK level, why haven’t they tested that with me? “Not necessary, that we do for muscle diseases, ALS is actually a nerve disease. We only do this if we suspect a muscle disease. And we do not suspect anything with you.

10) What about the my high reflexes? “ You can have high or brisk reflexes if you are nerveous, certain body type. We look for abnormalities in the reflexes.�

11) I read stories on the internet ( we all know certain stories, not going to tell them here again) “ Well, listen, that’s the internet
* It’s not a controlable source/place
* You don’t know if it’s true or not
* Facts are never given cleary
* I it’s in fact an als patient, it’s mostly a cry for help
* Some say I've been twitching for 10 months and now I get ALS, there would be signs if this person had had a clinical

12) Do you ever have patients going from BFS to ALS? “In 40 years – never “

13) Is ALS really that rare? 1/100 0000 What about young people? Well there are indeed cases of young people, but rare. The only connection we might see with young als patients is that they, in many cases, are very intensive sportspeople. We think that they would get ALS eventually but that they have accelerated it. But I mean real sportspeople not going to the gym or have a run, sport is good for you�

14) Do you see a lot of people with BFS? “Every week, listen, go on the street and ask 100 people if they have twitches, I wouldn’t like to feed them. Most people don’t even know they have them, some just feel something but think, okay that’s part of my body. Most people we see here with BFS are medical people who link this to ALS and of course the ‘googlers’(that's us ).


Other things he said-
-At some point you just have to believe this is not ALS, we are specialists trained for recognizing this disease, we don’t not easily miss something. As a matter of fact we have 600 ALS patients followed up here.

-If all that has been said over the internet would be true, I would not have a job!

-I can give you a book about neurology, if you read it, I’m certain that you will be here next week again thinking you got 1000 diseases.

-Twitching is mostly always benign.

-I’m concerned about this. I know you can become 100 years with this BFS but I’m afraid for the mental part. You have and try the quit your anxiety, the brain is so powerful.

His advices

- Stop searching the internet, you will always find the things you don’t want to know or aren't true

- Stop exhausting your body: stop running every stair, pick up everything, lift weights all the time. If you just go to the gym to work on your body and health it’s ok, but if this als fear is in the back of your mind during excersise you will exhaust your body even more and twitching will increase. Because you are doing things that you are not used too + your mind is being involved. Result: more twitching, more pain, more cramping,… If you would have ALS you would notice it in the little things like turning keys, grabbing things, getting up from a chair.

- If you worry about the twitches go to your GP get a note for the neurologist . Let them do a clinical. If you are ok trust him/her. Still not convinced, get a second opinion, but after that: stop! Life and enjoy.

- We cannot say never ever, so as I can’t say that you won’t mutate in an alien in 5 minutes either.

- With 99.9% we don’t mean that there is actually 0,1% that will get something, no this is wrongfully understood. Like I mentioned before, we have no garuantees in life, for nothing, that’s way 99,9%. We can’t give you a 100% that you won’t drop dead in 10 minutes. That’s all.

- Trust your neurologist, he’s the one that studied for this, he’s the one following ALS patients, we are not, you don’t know what we look for. Don't diagnosed yourself.

- For diagnosed ALS we don’t look for twitches but for weakness and atrophy, real weakness that doesn’t stop but only get worse.

- I know, he said, this twitching and all the things are bothering you but the only way to reduce them is REALLY accept it that there is nothing wrong with you, as long as you have the slightest doubt about it your mind will maintain this symptoms are even make them bigger.

Maybe there was more information but most things have been said here hundres of times. I’m now going to try and beat this fear and leave it behind me. I’m going to try not to visit the forum as often, but everyone can always PM me.

There is just one last thing to say: I want to thank everybody that supported me, people that PM 'ed me, that prayed for me, that listened too me. Thank you Deedee, Sandra, Sean, Mark, Denise, CDC, DD, Slavin Balen, Swedish Girl, Edado, Cindy, Wamjr1002 and many more. You are good people, love you all and God bless you.”

[pulisa]

Does it help YOU though,Jojo? xx