Advice please if you at all would.

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Phoeberose85

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Hi all,

thank you firstly for taking the time for reading this, I’ll give you the background on myself I am 35 I have 4 children aged 15,13;4 and 3.

My symptoms started July/August last year and have progressed quite quickly, I’ve gone from running a business to having to be helped with everything including eating, I can’t type text messages it takes me so long also. My right side is the affected side, it’s where I have the weakness, the fasciculations and my grip is weaker every day.

I used to manage with a stick around the house and wheelchair if out but this is increasingly difficult my legs give way more often and I will fall I’m also having a lot more dizzy spells. I have severe asthma and have nebulisers anyway but this is also getting worse, at night I feel as though I cannot breathe and my stomachs so heavy I can’t seem to catch breath it’s also harder to talk I just get so worn out and breathless.

My swallow is worsening and I am no longer able to swallow whole foods, it’s getting increasingly difficult to chew it’s like food is getting stuck underneath my tongue and making me choke and cough, whilst my jaw is so tired. I have lost 3 stone in 7 months and I’m now 6 stone I’m getting weaker and I feel my tongue fasciculations are also more regular pretty much every time I pop my tongue out.

My husband is very supportive and we have also been shielding Due to COVID, my neurologist thinks I may have PLS as my first EMG was ok although the man who took the test did not do it correctly as he only popped the needle in my muscle and didn’t move my leg at all or test my facial muscles or nerves or wrists so I had to have it retaken, also my chin.

Anyway I hope I’m making sense my question is just regarding your opinions if you think I should be getting any more help as in feeding tubes at this stage, I am now eating mainly ice cream and possibly even a bit of mash and gravy but I really don’t want to eat anymore I feel like a bad person saying this and I feel like so many people are worried about me but it really is so so much effort for me to eat the slightest bit that it wears me out so much. Does this make any sense to anyone and would any kind person have any advice for me?

also I had me EMG retaken 10 days ago and I have been referred to an MND clinic in London in the nextcouple of weeks,
Thank you I’m advance for your help.
 

Nikki J

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I am sorry for all you are going through

are you going to King’s ? They will take great care of you.

it does sound like whatever the cause a feeding tube would be a good idea and soon. Try to drink calorie/ nutrient dense smoothies in the meantime. Weight loss is very bad and accelerates muscle loss

try to avoid falls using whatever means / wheelchair zimmer frame whatever

if this is MND it sounds too aggressive for PLS quite frankly. I hope it is something else of course but your described symptoms are worrisome

please let us know what happens
 

Phoeberose85

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Thank you so much for your reply, I have a video telephone call with my dietician this morning and I’m going to see what she says as I have now lost more weight it’s not good. I try with the ensure juice plus drinks the problem is I cannot tolerate milk, I wish I could.
I think that is what is worrying my husband also, as my fasciculations have also started to show a lot more frequently these past few days.
I’m going to the National Hospital for Neurology and Neurosurgery MND clinic in London, the nurses seem lovely so that’s always a bonus.
Thank you for your kind words.
 

lgelb

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How about nut milks or oat milk? Mixed with eggs, nut butters, pureed meats, fish, tinned fruits, etc. Even just a spoonful of nut butter has a lot of good things. There is nothing wrong with regular fruit juices or applesauce as a base, either -- just not citrus. Chilling the concoction with crushed ice can make it more palatable and closer to your ice cream. Hope you can get the tube sorted soon.

Best,
Laurie
 

Phoeberose85

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Thank you so much for your reply, I have been referred to have a peg feeding tube fitted, my dietician thinks it is for the best. I will hopefully have the procedure done within the next couple of weeks I think. I am quite scared about it but I know it will give me a lot more strength.
Thank you again for your advice.
 

Phoeberose85

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Hi all,

sorry to bother you but I’m after a bit of advice, I am still undiagnosed but my neurologist seemed to think I may have upper motor neurone disease PLS but symptoms have progressed so much over the past few weeks, I have fasciculations on my tongue and they were originally only on my right side but have moved to the left leg along with cramping, I have falls, I’m using a powered wheelchair although I can walk aided a few steps but it’s not the safest I will admit. I can’t feed myself and have lost 3 1/2 stone in 7 months and I am now unable to swallow solid foods, I struggle so much my jaw is just aching like I cannot tell you.

I am having a PEG fitted which is hopefully going to help me nutritionally, and I am seeing the MND consultant in LOndon this Thursday.
I have severe asthma and have nebulisers at home daily, but my breathing is worsening it feels like my diaphragm is being pushed and hard to take breath lying down which doesn’t feel asthma related, I’m breathless on rest and talking is a strain.

My worries are that I would say over the last few days I am struggling to speak and my jaw is so aching and sore that I feel I can’t talk properly, my tongue is weak and I am talking mumble my family are finding it hard to hear and understand me, I am hoping you may be able to help me as I am struggling so bad I can’t breathe to talk and I don’t know if my jaw is related to all that’s going on.

Can anyone help me clarify if you have this Jaw type symptom I am describing? I have 4 children and I’m just tired talking and would love your advice please, I feel maybe my husband and myself at our last appointment have taken things totally different. When he said Upper Motor Neurone does he mean PLS or have we taken it upon ourselves to hope it is this? It only actually dawned on me that he didn’t actually say the words and it was my husband who jumped in and said “oh PLS” just wondering if we are barking up the wrong tree with how fast this has progressed.

How do you cope with talking when people are visiting and you can’t talk I feel so rude but I’m so exhausted and I can’t do it.
I’m sorry if I’ve been depressing but I feel nobody understands the explanation of how I feel, hope you guys can help me.
Thanks in advance
 
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Nikki J

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I am so sorry you are struggling so. I am glad you are being seen Thursday and hope you get answers.

the neurologist would have seen umn dysfunction on exam and may have been commenting on that rather than giving a diagnosis. I hope I am wrong but as I said before if this is MND it seems too aggressive for PLS.

when you are seen they will, I trust, do breathing screening tests , organize an emg very soon and get you support equipment and services. Can you use text to speech? There are apps for that

please let us know what happens
 

Phoeberose85

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Thank you for getting back to me, I know I am hoping to get some clarification on things on Thursday. Fingers crossed anyway I have already been referred to a respiratory specialist but I’m not sure if that’s related to me having the PEG soon and being checked or my asthma worsening?
So complicated isn’t it?
I feel I am struggling so much, I may have to look at text to speech I haven’t really looked at ways of communicating as it’s all happened so quickly, it really does smack you in the face.
Thank you for taking the time to give me some advice.
 

Nikki J

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If you have not already done so read getting a diagnosis near the top of this subforum. Some is not applicable to the NHS but much is. Be prepared with questions and with what you want to tell them. Write things down ahead of time.

visits are always difficult and emotional and it surprisingly easy to forget something in the heat of the moment. I am guessing your husband is allowed to accompany you ? He should try to take notes unless you are given permission to record.
 

lgelb

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They would certainly want to check your breathing, not just the asthma, before doing the PEG. So you should get more insight on where that stands. If your breathing is significantly impaired, you should have BiPAP during the procedure. Either way, be sure you let the staff know that your jaw is very sore and your tongue weak, so they can take proper care.

Unfortunately, I agree with Nikki that this does not seem like PLS.

Best,
Laurie
 
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