Feeling so scared and alone

[Mrsford]

Hi everyone, I'm new here. It's taken me a while to join as I just haven't been able to face it but some thoughts and opinions would be greatly appreciated

My symptoms are as follows
May 2014- suddenly noticed I couldn't catch my breath, would need to sleep sitting up. Sleeping very disturbed, only sleeping for an hour or two at a time. Just learnt to live with it
June-2014- found out I was pregnant, breathing issues continued and got worse as baby got bigger ( assumed normal as baby pressing on my lungs also lots of weight loss and loss of muscle bulk, pretty much everywhere and fairly equal .
Feb-2015-had baby. Breathing issues improved but went back to how it was just before I got pregnant. Still waking frequently during the night, tossing and turning
June 2015- found that my left and dominant arm and shoulder felt weaker than the right, so much so that I had to switch carrying my daughter to the right arm.
Feb 2016- noticed shoulders and neck aching, especially in bed at night time. Noticed a few my muscle twitches in quads and abdomen
March- 2016, noticed some swallowing issues on and off ( not every day). Some days just felt harder to swallow others days nothing. Doc said its anxiety.
May 2016- increasing fatigue, yawning all the time. Ordered blood tests f

 

[Mrsford]

Sorry, sent it before finished

Ordered blood tests for anaemia, all normal
June 2016- feeling harder and harder to lift my daughter. Also increase in twitching
July 2016-voice feels quieter and it feels exhausting to talk. Slurred words a couple of times a work. No slurring since. Throat feels scratchy and I have a tickle in my throat often. Also lack of appetite. One day felt like I was finding it harder to lift my right leg ( no problems with the leg now apart from fatigue). Feeling like it's harder to do things with my hands like picking up coins, feels stuff when writing. Also started dropping things.
August- noticed that clothes that fitted me well when I was about a stone lighter are suddenly looser on me.
Twitching is worse, I also have a few in my tongue
August 2016- saw neuro, he said I didn't have clinical weakness but as I just found out I'm pregnant again and was very worried about ALS he would do EMG. He also found my plantur reflex to be minimal but said this can be normal. Also said my other reflexes were normal. Since then I've noticed I don't have any abdominal reflex but he didn't test this at the time. He also didn't see any twitches on examination but I felt a few at the time. EMG I week later was clean. He only arms and legs on both sides (about 11 different sites in total) and said that I did not have MND. My twitches, weakness and breathing issues have got worse since then ( my EMG was 8th of September)

What does everyone think?

 

[affected]

I'm sure your neurologist told you that there is nothing to be found - no clinical signs and a clean EMG. You have ZERO indications of anything even remotely like ALS so put that aside and work with your doctor.

Please get help for your anxiety and prepare for your new baby.

You absolutely do not belong here. All the best.

 

[Mrsford]

Thank you affected. I really appreciate the reply. I'm just so concerned that I've had slow respiratory onset for the last two years and now it's progressing to my limbs. Also my twitches are everywhere not just in my quads. Also would EMG be normal if I didn't twitch at the time of the test? I certainly didn't feel any twitches in the areas he was testing at the time but I do get twitches in those areas. Could that he reason it didn't show? Also does respiratory onset progress quick. Someone has mentioned aspartame poisoning to me as I've drank nothing but Diet Coke since I was about 10, I'm now 30. I've stopped any artificial sweeteners since I realised my symptoms could be something awful. It's been a about 6 weeks since I touched any but I haven't seen any improvement. I really am so sorry to be posting here and I hope I do t offend anyone or make anyone mad or upset. I feel like I'm going crazy.

 

[affected]

Read the post at the top of this forum titled READ BEFORE POSTING.

You simply don't have any ALS symptoms and I'm so glad to tell you that.

Twitching means NOTHING. All the best.

 

[affected]

Oh and most people with respiratory onset are dead within 2 years, so stop fixating on what you don't have and work with your doctors

 

[WendyWooG]

Hi Mrsford
Twitching or not during the EMG won't make any difference. I had zero twitching when I had my first EMG which showed problems.
If you get hung up on mnd as the cause of your symptoms it actually gets in the way of finding out what is really causing your problems. If you had a clean EMG and were clear on your clinical exam then you don't have mnd. Now you know that you need to go back to your GP and work with them in finding out what's wrong with you so you can get the best treatment.

Good luck

Wendy

 

[Mrsford]

Thank you Wendy, that's kind of you to respond and I really appreciate all thoughts and opinions on this. I do have another question tho. Is it possible to EMG back muscles? I asked the doc about my back and that it was weak and he said you don't get MND in your back and that's why he sampled the arms and legs. Is this true about the back thing?
The doctor I saw was private, basically I got an NHS referral from my GP end of August but couldn't be seen til October so I decided to pay to see a neuro privately and that how I came to have the EMG. Am wondering if I should go to the NHS appointment to get a second opinion. To be honest all the symptoms are worrying me but the night time breathing thing is like torture as I never get a decent night sleep.

 

[WendyWooG]

When I had my EMG I had needles inserted in my back and ribcage area. Was the private doctor you saw a neuromuscular specialist?

Your doctors will take into account all of your symptoms so if your clinical exam was normal and EMG clear in the areas tested you are ok as far as mnd is concerned. The EMG will show results before you have symptoms in that area. So if you are having symptoms and a clean EMG in that area the doctors will want to look for other causes for those symptoms. Twitching in itself can be caused by lots of things other than mnd.

as you are still anxious and struggling with your symptoms yes hang on to your nhs appt. when you see them don't ask is this mnd, ask what could this be?? In the meantime go back to your GP and ask for more help with your breathing issues at night. Lack of proper sleep can cause all sorts of problems in itself including muscle fatigue. Get them to refer you so you can have it checked out properly to remove some of your stress.

Wendy

 

[Mrsford]

Thank you Wendy. I'm truly so greatful for a response The guy that did the test was neurophysiologist. He seemed so confident. I told him about the breathing issues and he didn't seem bothered.

I will definitely keep the NHS appointment. I have been experiencing cramps and twitches and loss of bulk in the muscles he sampled so surely it would have shown something.

I spose I'm just so fixated on this because I know te main symptoms of MND are weakness atrophy and fasiculations. I have also read about symptoms of respiratory onset and frequent waking and it just seems to ring so true to me. I hope and pray every minute of the day that there is some reasonable and treatable explanation for all this.

I certainly have some weakness although it's not classed as clinical, it been gradually getting worse. Now with my swallowing issues ( although I've not choked on anything yet) I am totally convinced there is some neuro condition going on. I also worry how the respiratory thing is going to play out as my baby get bigger.

I experience hyperemeiss in pregnacy ( severe vomitting) I have it this time and when I puke now I can't control it coming out my nose, it's like my pallet is weak, with my daughter I could stop it coming out my nose. I don't know the answers just that all this is ruining my life, stealing joy and happiness. I will let you know the outcome of my NHS appointment

 

[affected]

Wendy has given good advice.

I know you read things and then figure you can match it to your situation. But I read what you say and wish that is what my husband had experienced as you are not describing ALS.

Have you had a sleep study done? Many people sleep with a CPap for apnoea, and this is not a rare terminal condition but a very common one that can be dealt with. I'm not saying you have apnoea, just pointing out that your sleep/breathing issues could be many common conditions.

Any weakness not classed as clinical means absolutely nothing, and this what I mean by you read things and figure you can match it up, but in fact you are painting the picture you fear over the top of your situation.

I hope you talk seriously with your doctor to investigate your issues, as they can see and examine you. All the best.

 

[Mrsford]

No not had a sleep study, I will ask dr tho. I was seen over a year ago for these issues and was referred to a cadiologist who did a whole load of heart tests. I have a follow up on Monday so will talk to them about it

 

[Mrsford]

So I had my cardio follow up last week for all the breathless symptoms I've been experiencing. He said ya defiantly not caused by a cardiac issue. I agreed and when I told him about my other symptoms completely crying my eyes out his face fell and said I should go back to a neuro for further assessment. I just know . My breathing gets worse by the day as does my swallow and very sensitive gag reflex. I was shopping g for my baby daughter the other day and the fatigue I felt in My legs was unbelievable. It's been like that ever since. I just don't know how to go on. I actually could not cope with such a diagnosis and am considering cancelling my neuro appointment. I can now feel twitches between my ribs when I breath. I can't face it. How could I face a diagnosis when I'm expecting another baby. Everyone here is just so brave

 

[affected]

Either go to a neurologist or go away from here. We HAVE faced the diagnosis, and we can't pander to you with this nonsense.

There is a site called anxietyzone, it would be the appropriate place for you to discuss your fears.

If you ever go to a neuromuscular specialist, you are welcome to come back and tell us the results. All the best.

 

[Mrsford]

Downy I have to agree with you. Just because I suffer with anxiety does not mean I absolutely cannot have ALS.

I have many symptoms, I don't see how someone can say I wish my husband had your symptoms when I have weakness, fasiculations, breathing and swallowing issues along with a whole host of other things. it's screams ALS and this disease affects everyone in different ways, just because it doesn't fit with something one else's set of symptoms does not mean I am ok