Do I have ALS symptoms?

[Titch7]

Hi everyone.

I hope you’re all as well as you can be. I truly am so sorry that you find yourselves here on this forum and I genuinely do hope for a treatment/cure, that prevents this nasty disease from stealing anyone else

I’ll be honest, prior to my perceived “symptoms” and “Dr Google” I very ignorantly knew incredibly little about ALS. I would now like to start donating to somewhere that you could please recommend, if that’s okay?

I’ll try to be as thorough as possible, giving a complete and full picture in order to prevent yo-yo messaging back and forth. Your time is precious and I don’t want to waste any of it, more than I possibly already might be doing.

I’m 38 years old, female and from the UK.

In 2015 I was diagnosed with early onset osteoarthritis in the mid thoracic spine. I have terrible posture, from slouching forward and regularly have backaches.

In June 2020 TMJ was diagnosed and a mouth guard prescribed for sleeping with.

In June 2023 I had my first and only child after 8 years of unexplained infertility, 3 miscarriages and IVF.

In November 2023, I had a DVT and was placed on blood thinners for 6 months.

At the end of April 2024, I suffered a 4th miscarriage, from a surprise pregnancy.

In May 2024, I began to feel unwell and fatigued but couldn’t put my finger on what it was and began to loose weight, with constipated bowel movements. I went to a private GP and had bloods taken, which all came back normal bar borderline ferritin and just above normal magnesium.

In June 2024, I was having tests for a blood disorder, as I’ve had so many miscarriages and the blood thinners that I had been on had been causing SEVERE blood loss during periods. My gynaecologist consultant had suggested this testing, after my history of miscarriages and the miscarriage in April 2024. This was done privately.

All of these blood tests came back normal, apart from low VonWillebrand Factor and low ferritin.

In July 2024, the NHS GP wished to have the tests repeated and wanted me under them for this suspected blood disorder. I was then sent for the tests to be repeated. My weight loss was now 1 stone but my appetite had decreased, as I’ll admit, I was a little anxious and confused about it all.

The results of these tests showed normal VWF, high Factor VIII and low iron. They also tested for Lupus and various other things like celiac’s and blood cancers. All normal.

The NHS haematologist was concerned about the low iron and referred me back to the GP for further investigation, as to the cause of the low iron but suspected it was caused by the heavy menstrual issues, from the blood thinners which I finished taking in May 2024.

The GP sent me for a chest x-ray, MRCP, abdominal and pelvic ultrasound and a CT of my chest, abdomen and pelvis.

All of this came back normal except for a small (9mm) lesion on the cartilage of my lower right ribs (likely begin hematoma) and a small 4mm lung nodule in my left lung (which had been seen 4 months prior on a CT, when they suspected a PE due to breathlessness and high heart rate but I was pregnant and that is what was causing it).

In August 2024, I was also asked to complete a FIT test, as I had noticed a very small amount of blood on the toilet paper when wiping, one time but I had a hemorrhoid due to the recently developed constipation. I was also experiencing intermittent pain in my lower left abdomen. This FIT test sadly came back positive for high levels of blood and so I was sent for upper endoscopy and colonoscopy.

More bloods were ordered and the iron was still low, as well as a severely elevated CRP inflammation marker of 44 (normal is 1-3) but I had just had sickness and loose bowels from a bug from my little boy 48 hours before the blood test.

Both endoscopy and colonoscopy were thankfully clear. I was then placed on iron replacement and have been taking this since mid August.

The NHS haematologist then repeated all of her bloods and everything returned back as normal and I was discharged. Magnesium wasn’t checked though and hasn’t been checked since May 2024.

My weight loss is now 1st 6lbs. The colonoscopy prep took some extra weight off (5lbs of which I’ve gained back 3lbs) and I’ve been unable to get any of the rest back, despite my appetite increasing.

Then came the uncomfortable ribs. They felt bruised at first but my ribs are now visible due to me now only weighing 8st 13lbs. They mainly hurt and felt uncomfortable when I was sitting/driving, or lay on my side in bed (I’m a side sleeper). It felt like the muscles in between the bones were pulled and they sometimes cramped. The bruised feeling is now gone and just on the left side, is tingling and burning in 1 place. It’s not painful, it’s just noticeable and uncomfortable. It’s not constant either and stops for a while before returning.

Around 6 weeks ago, I was walking to the bathroom and felt a sharp pain go from my left bum/butt cheek, down the thigh and into the leg. The sharp pain only happened once but the pain in the leg continued for a day or so and then disappeared but left the leg feeling not right.

Around 1 month ago, I noticed I was getting restless legs when in bed, mainly in my left leg. I’ve had this feeling before. A week later, my left leg started to feel heavy and I was struggling to bring my knee all the way back. This felt similar to when I had the DVT in the other leg, so an ultrasound was done and it was normal, thankfully.

The left leg has continued to feel heavy and uncomfortable (even when sitting and particularly when driving) and frequently twitches in the back, side and front of the calf. My toes will sometimes feel odd and begin to twitch also and my big toe raises when I walk. The bottom of my foot tingles sometimes and also twitches. I also feel like I can feel the blood flow in my leg. The twitching has now (a month later), started to happen in the thigh and calf also. I also sometimes feel like raindrops are hitting my left leg and left arm but when there’s no rain and odd “prickles” of heat in little spots that lasts seconds and disappear.

I can walk on my tip toes with ease and also on my heel. I tested this yesterday. My left foot does sometimes catch at the front on the ground when walking and when inspecting my shoes, all of my shoes are scuffed at the front but only on the left shoe. I also very occasionally “trip” over nothing with my left leg/foot and have for some time.

I should also point out that about 2 years ago, my husband noticed that my left foot is turning out when I walk.

2 weeks ago I started with a headache, slight dizziness, eyes feeling bruised and sore and ringing in my ears. I’ve also been feeling cranky, irritated and can’t seem to concentrate or remember things but this has been happening for a while.

It had been 3 years since I had an eye check up, so I went for one and all was fine bar an ever so slight change in the left eye and prescription change (I wear glasses for long distance and night driving). An OCT scan of my eyes was done to check the optic nerves too and all was okay.

At a follow up appointment with my GP for my iron 2 weeks ago, I mentioned the dizziness, constant headache and tinnitus and was referred to an ENT. I’ve been to that appointment last week and had everything checked and all was okay.

Around this time, I was in the supermarket at the self check out and a litre bottle of laundry liquid slipped through my hands, hit the floor and covered me and the floor. I’ve also become clumsy, which is not like me at all.

A few days ago, my left hand started to feel strange. The index finger (pointing finger) started to feel stiff and also my thumb, all at the joints. My hand also started to feel weaker grip wise. Yesterday, the top of my wrist started to feel bruised. I’m also experiencing tingling and uncomfortable feeling. The right hand then started to feel the same but no pain in the right. My hands are no longer relaxed and I’m holding them curled up, subconsciously.

My right eye also started to twitch a couple of days ago, as did my bottom lip, on the left side. This lasted a few hours and stoped and hasn’t returned since.

Yesterday, my arms started to feel heavy and weak and my grip is much less in both hands. I’ve also started to get twitching in my forearms and bicep area.

I do NOT have split hands and I can’t notice any atrophy in my hands at all. My watch no longer fits and slides down my wrist but I’m guessing that’s down to weight loss?

My legs are skinnier but this is likely because I’ve lost quite a bit of weight? My calves were both measured in Nov 2023 due to DVT and medical records say they were both 39cm (the DVT was behind the right knee, which is why there was no calf swelling). Today both calves measure 33cm.

I’m an ex smoker (10 pack a day for 12 year’s history) and moved to vaping in 2014. I’ve recently purchased nicotine replacement therapy and will be commencing that this week.

Lastly, my resting heart rate is quite elevated. It used to be in the 60’s and is now in the 80’s and 90’s.

I think that’s everything. I apologise for the information overload and full medical history. I just wanted to make sure that you had everything.

Does any of this sound like ALS?

I really do appreciate your time and effort and thank you so much for reading.

Please remember to let me know where I can start making donations to in the UK, to support ALS.

Thank you

 

[lgelb]

It does not, fortunately. However, I would ask that your iron be monitored as too much can be worse than too little, especially if you tend to be dehydrated and possibly stressed as is possible with the higher heart rate and twitches/drops/weird feelings (that can also relate to lack of refreshing sleep). You might want to try a wearable to assess your sleep and give your GP more information.

That is a high resting rate and thought should be given to reducing it by first assessing why it jumped. There might be nutrition strategies or a small dose of an antihypertensive that would be appropriate -- as well as hydration and more sleep.

It's also common for clumsiness and odd feelings to follow the lack of sleep that comes with a toddler and various health issues, but for me you're not describing neuromuscular disease at all. Not sure how you came to that, but I'd put it out of your mind.

The MNDA would appreciate your support, I'm sure.

 

[Titch7]

Hi Igelb,

Thank you so much for your reply.

MNDA will certainly be receiving my donations, starting from today. Thank you for signposting me there.

I didn’t know that about too much iron. I don’t think I’ve too much though, as the levels became so low, they said I’d need to be on it for 3 months. I’ve not quite done a month yet. But I will get this checked, as it can’t harm.

I do wonder if magnesium could be a player in all of this? Since posting, I’ve had a look and if your magnesium is already on the lower side of normal, heavy periods can deplete this further and also, the colonoscopy preparation (Moviprep), as it doesn’t contain magnesium and depletes your levels. I think I shall go and have that checked too.

Funny you should mention dehydration. I’m never thirsty and forget to drink sometimes all day, as I’m so busy with the baby. During pregnancy, my craving was iced water, so this was never an issue.

I was prescribed bisoprolol (as use as a mild beta blocker) during pregnancy, as it was a twin pregnancy and I lost one at 12 weeks and became incredibly anxious, as you can imagine about my remaining baby. I discontinued the use of this around 3 months ago, as I noticed my hair was starting to fall out in clumps, after the 12 month birth mark, so not postpartum hair loss. Could have been the low iron I guess?

Blood pressure was checked at the GP a couple of weeks ago and was on the slightly lower side of normal they said (108/67 and pulse 78), so I’d be cautious about using any antihypertensive medications at present but a great suggestion.

I definitely do not get enough sleep either. I go to bed far too late!

I think I’ve taken a bit of a knock in the kastv2 years, mentally. IVF, complicated pregnancy, early delivery via c-section, NICU for the baby, DVT, miscarriage, suspected bowel cancer and blood disorder, my baby’s operations, all one after another and in a very short space of time. I never really thought about my health before (or that I’m aging and not invincible) and then was hit with all of this. It’s been quite stressful and very worrying. I think I possibly may need to talk to someone, as ending up posting on here I think points to some possible health related anxiety.

Dr Google brought me here, as it pointed me to MS and ALS. I’m glad it brought me here in one way, as I got the information about MNDA, so they have another supporter in me now.

I’ll stop looking at ALS as an explanation for my weird health ailments.

Thank you so much again, for your time. I’m so sorry about the loss of your husband and I wish you all of the very best in life.

 

[Titch7]

Hi,

I just wanted to update my thread, in hopes that it could possibly help someone else in the future, who is frightened/anxious.

I was very fortune to be able to get an appointment (privately) with a Neurologist who is a Professor and Co-Director of an MND unit.

This is copied and pasted from the clinic letter that I have just received…..

“This 38-year-old right-handed director of a ***************** had booked this appointment. She was unaccompanied. Apart from right leg DVT, she reports no past history of note. She is an ex-smoker (stopped more than ten years back) and drinks alcohol socially. She is not on any regular medications. She lives with her husband and ********* month old son.

Symptom onset was seemingly three weeks back when she noticed random twitching affecting her limbs, eyelids and lips. The twitching can be felt and seen. There was one episode of cramp affecting the left leg. She feels that her limbs are “heavy” but wonders whether the symptoms are “all in the head”. She reports no visual, bulbar or sphincter disturbances. Her sleep is significantly fragmented as her little one does not sleep much.

I was sorry to hear that she has been under significant stress over the last few months. Apparently, she had some abdominal pain, and the possibility of an underlying significant cause was suspected. She tells me that she was extensively investigated with endoscopy, CT of the chest, abdomen and pelvis and other investigations which were unrevealing. The abdominal pain spontaneously settled. She volunteered that she has developed health anxiety as a result and has lost roughly one and a half stones in weight.

There is no family history of relevance.

On examination higher cortical functions were normal. Visual fields, fundus, eye movements, pupils and facial sensations were normal. There was no INO or RAPD. The rest of the cranial nerves were entirely normal. There was no wasting, fasciculations, spasticity, weakness or sensory abnormality. Reflexes were slightly brisk but symmetrical and plantars were flexor. She was able to hop on each leg without any difficulty. There were no cerebellar signs.

I note that she was extensively evaluated with normal full blood count, renal, liver and thyroid function tests. Serum calcium and magnesium were also apparently normal.

Opinion

The clinical picture is indicative of benign fasciculation syndrome. I have explained to her that such symptoms are commonly seen in the context of stress, anxiety and sleep deprivation. She was worried about the possibility of motor neurone disease, and I have reassured her that there are no signs, whatsoever, of the same at the moment. She felt reassured and had no further questions. If her symptoms continue to be an issue she will get in touch with my secretary, and I would be happy to arrange nerve conduction studies/EMG.

I was sorry to hear that she has been troubled by significant anxiety and she has a baseline heart rate that runs between 80 and 110. She wonders whether she was a “lunatic”. She is planning to seek some help regarding this.

She has an open appointment”


Is there anything here that would give you any cause for concern? Ie the slightly brisk reflexes?

I’m confused as to why an EMG/NCS have been offered when he has stated that he saw no evidence of disease and only BFS suspected? Is that more a money making thing, to offer these additional tests?

I guess what I am asking is; based on this would you walk away and leave this alone now and focus on health anxiety support, or would you have the EMG/NCS first?

Thank you and I have already set up my monthly payments to MNDA from last month

 

[Nikki J]

Brisk reflexes are very common. Even more so in people who are anxious. They are unworrying.

I suppose it could be financially beneficial for them if they did an emg but more commonly it is misguided kindness because they think it would reassure you if you can’t let it go. I can tell you this virtually never happens - people then decide it was too early, it was done incorrectly or done in the wrong place. Do not fall into this trap. Walk away and don’t look back

Thank you for supporting the MNDA

 

[Titch7]

Hi Nikki,

Thank you so much for your reply.

He was a very kind man and he and his nurse also said “we honestly see about 10 patients per week, with this same fear. It’s very common and you’re not alone. Dr Google throws up MND for all sorts. We saw a patient not long before your appointment with the same fear!”

I think they could smell my fear the second I stepped into the room.

He also said that the reason why we fear this so much, is because of the current certainty of the outcome. I pray that the current certainty one day changes.

He explained that you need to have muscle wasting (atrophy) and/or clinical weakness BEFORE fasciculations, for there to be a serious problem. He said he’s always been able to see/suspect MND in a clinical exam BEFORE EMG’s etc.

He said if I wanted to shut my brain off completely from thinking about this any further, he could send me for EMG’s and a brain MRI but that they would be pointless, as I don’t have MND or MS but I can have the tests if I want them, so I guess he was offering them to be “kind” wasn’t he, or for financial gain? I don’t know and guess I’ll never know.

I asked him directly if I were his daughter, what would his honest answer be to her based on my presentation today? He said “I’d say you need to go home and behave and get on with living and enjoying your life”.

He then said “I’ll tell you all the reasons you don’t have it; 1. You’re the wrong age, 2. You have no family history of MND, 3. Your female, 4. You have no weakness or wasting, 5. You just don’t have it”.

For anyone else reading this post, worried and anxious…..

The bottom line is this, the sticky in here about symptoms is 1000% accurate! The gentle souls who have compiled this, know their stuff. They’ve lived it personally, or have watched it personally. They know the drill.

I’m choosing to take the word of these lovely folks and the highly decorated, educated and respected Professor that I saw and leave this behind me now and I suggest that if you’re reading this (and have no clinical weakness or atrophy) that you do the same too.

Anxiety and health anxiety really does mess with your body and your mind and it can ruin your life. It’s started to ruin mine and I’m done with it!

Get on with the rest of your life, live well, be kind to others, stick close to the Lord and be grateful for every day.

*So much more research and funding is needed for this horrible disease. I believe if you find yourself here, being helped by this forum by folks out of the goodness of their hearts because you’re anxious and you’re found to be healthy, the very least that you can do before you disappear and get on with your life, is to donate to the cause.

I think that’s fair, don’t you?

MNDA is the UK one that I’ve started monthly donations to but there will be one for your country too, just ask the lovely folks on here and they will point you in the right direction, like they did me*

I’d also just like to finish by saying thank you for the support and knowledge from this group and I wish you all of the very best in life and I will pray for you all.

Now to go and get the help that I truly need, with my health anxiety before it destroys me and robs me of living in the moment with my husband and our very much longed for baby.

Much love and God bless you all xxx