Looking for information

[Zak2022]

Hello everyone, Thank you for allowing me to join your forum and support network.

I have been going through a diagnostic process for neurological symptoms I have been dealing with for over 12 months, while I wait to be processed through the NHS again I was wondering if I can ask some questions regarding what I am dealing with and if any of it sounds familiar to the members.

Brief background -Since it started I have had numerous tests all of which have come back normal apart from two:

EMG - Fasciculations seen during physical and needle exam
MRI - mild disc bulging in neck and lower back with no nerve compression

Current symptoms are, fasciculations in multiple areas, weakened grip in left hand, tightness in ankle and calf on right leg, reduced muscle bulk on right calf, feeling that muscles are about to cramp (never gets to the point a full cramp develops) and throat locking feeling

In the last 4 weeks, random pain in my shoulder started for no apparent reason, after a visit to a physio I was told I have weakness in my shoulder and mild scapular winging and I now twitch in certain muscles (shoulder, throat, forearm) for around 10-15 secs after movement, e.g. if I yawn my neck will twitch for around 10-15secs then stop

Finally the questions:

Is it possible for my initial EMG to have been carried out too early for other clinical MND signs to be seen (6 weeks after fasciculations seen)
Are these new movement started fasciculations a progression
Are there variants of MND that affect limbs that do not show up on EMG

Thank you all in advance who take the time to read this.

[PeterPan]

Zak2022 Hi Zak, I’m not sure any of us will be able to answer your questions. No one here is a specialist neurologist and, for you, the answers to the questions are of huge significance.

Forum members can give practical and moral support to people who have been formally diagnosed. I realise this won’t help you much and I’m sorry about that but strongly suggest you talk to a qualified specialist.

It must be a really worrying time for you and hope you do get the answers you need.

[Zak2022]

Peter,

Thank you for taking the time to respond and I appreciate that I am not going to get definitive answers here, I didn't mean to make the first question specific to my and my situation. Was aiming for more generic understanding of the testing/results and the condition.

With the unknown waiting time to see a neurologist, I am just trying to find out as much information as I can on the many conditions that may cause the symptoms I am suffering from and giving the varying and overwhelming information available it is difficult to comprehend what is accurate. I apologise if my post has come across as insensitive or caused upset, like I said I am just trying to arm myself with as much knowledge to see if I can narrow down what is in front of me.

Thank you again for your response

[Ellie]

... Was aiming for more generic understanding of the testing/results and the condition.

Seeing fasciculations on an EMG can indeed be normal - most people twitch, most are benign, so don't over intepret mere fasciculations found during an EMG test.

[Zak2022]

Ellie

Thank for your comment. I did find some information on BFS which details what you mentioned in your post regarding most people twitching and that they are not serious on their own. As I have other symptoms that coupled with the twitching can point to something more serious, this was the reason for the question as to whether EMG's can be done too early from onset of twitching to other damage showing.

Also the twitching brought on by movement has me concerned, I have read that exercise can commonly cause muscle twitching but all I have to do is rotate my shoulder or tense by bicep to kick them off.

Thank you for your time

[PeterPan]

I apologise if my post has come across as insensitive or caused upset

No sensitivity or upset. Just wanted to explain that many of us aren’t very knowledgeable, or can only talk from a personal viewpoint. A little knowledge can be dangerous!

[Zak2022]

Glad to hear Peter.

I agree knowledge is a doubled edged sword in terms of reassurance and worry but with how long I have been going through this and the amount of different therapies I have tried, none of which have helped to any great significance I decided I would learn as much as I can while waiting for the specialists to hopefully find the reason.

[Banned]

MND starts way before symptoms appear.

There are blood tests to help identify if you have MND, recently introduced that even the neuros may not be aware of. Many MNDs are genetic.

There is a lot of misinformation by users of this forum. Personally, I would do my own research to get as fully informed as possible, but please realise that you will be lucky to get it sorted but don't give up.

[Zak2022]

Graham,

Yeah after 12 months of this I am somewhat dejected in my search for answers, it is hard to hear that every test you carry out is "Normal" yet your body continues to be affected. All I can do is hold out hope and keep pushing with the doctors.

I understand your warning of misinformation, there seems to be conflicting information everywhere regarding this and many other conditions. I will continue to do my own research and hope it works out, that's all I can do at this point

[PaulaF]

Zak, I've had a 7 year search for answers, being told for 6 of those years that everything was 'normal'.
This is my information. If it conflicts with anything, it is probably because we are talking about neurological diseases with different causes,.
1. The muscle wasting started 3 years before an EMG test that came out as 'normal'.
2. A second EMG after 3 further years showed widespread denervation damage by then, and led to a diagnosis of 'probable atypical MND'.
3. No fasciculations (yet?).
4. Mild disc bulging in the neck without compression, but with some thinning of the spinal cord in the same area.
5. After 7 years of it, the 'probable MND' has damaged some muscle fibres (type 2), but had no effect on others (type 1).
... Although this doesn't seem to be a common set of MND symptoms at all!
As the consultant said - everyone is different.
Sometimes, I find the search for information drives me crazy, and wonder whether to just make the most of things and take each day as it comes.
I wouldn't necessarily give up on all therapies/supplements though. They might not provide a miracle cure, but there is some evidence that some of them benefit some people.

[Zak2022]

Paula,

Thank you so much for sharing your background with me and I am sorry to hear of your drawn out struggle.

I relate to your feelings regarding searching for information and sometimes feel that I should just accept what is happening and try and get on with life, the only thing that drives me on is the fact that although some of the potential causes of my symptoms do not have a cure, there are things that can be done to preserve and extend quality of life and I would be letting myself and my family down if I didn't keep looking and trying. hope for the best, plan for the worst

If you don't mind answering, when your atrophy started was there any weakness involved? A lot of the MND information I have found states that atrophy happens only after weakness

Regarding the therapies I have reduced the frequency of my chiro but am still visiting a Physio to see if this improves anything.

Supplements I am not sure about as there is a much conflicting information about these are there are my symptoms. If there are any you can suggest I would be willing to look into them and discuss with my doctor

Again I appreciate the input so far from all users

[DeeH]

Zak2022

I don't wish to comment on what your tests mean or that.

Just to say from observing my husband's path with MND of the Fail Arm type diagnosed in July 2020. Everyone is very different as well.

I would focus on your range of motion as well at strength. Balance stuff, Thomas' balance with amazing all his life.

Husband experienced weakness in muscles, trips, weakness of grip, continue of tightness of muscles around neck and head.
We were regularly doing yoga a few times a week and the his abilities were getting much poorer.

It was the curling of his fingers which eventually drove him to the GP.

So most of 2019, symptoms dismissed as age, over or under training at 56.

But the difference from December 2019 to July 2020, was so marked as if speeded up.

I am the researcher in the family and getting advice from people living with the disease is good.

But there is alot of difference in presentation ie, arms, legs or voice/swallowing.

I would advise to enjoy life whilst keeping an eye on fitness both strength and range of motion, health and weight loss. etc

My husband went to the gym very regular and exercised since the age of ten and had a great diet. The progression was unstoppable.

Only advice from professionals in don't exhaust yourself.

So make of this as you wish. Just a personal observation and lived experience.

Due to COVID we couldn't have a holiday and enjoy when Thomas was on his feet. So the main thing I would do if I could do back is take more day trips and make memories. Enjoy yourself, have cake and a laugh because no one knows what the future brings.

[Zak2022]

DeeH,

Thank you so much for your post.

I am overwhelmed by the kindness I have been shown in this forum, I cannot even begin to comprehend what you guys are dealing with but the fact you are willing to share and help a complete stranger is amazing.

I appreciate your advice regarding exercise and I am somewhat following this at the moment but at times pushed the muscle to complete failure in an attempt to "test" if it is getting worse than before. Will make sure I resist that urge going forward

You stated your husbands symptoms were dismissed to begin with, was that from PCP or specialists? I have found my GP to be excellent and fully supportive to find the reason behind this but have mixed experiences with the Neurologists I have spoken too.

[DeeH]

Zak2022

The symptoms were dismissed by my husband all through 2019, he was only 56, he put it down to under or over training. He started to drop weights at the gym and couldn't grip bags. On one memorable occasion when I wasn't there he couldn't grip his bank card in time at the ATM and it got swallowed.
I pestered him to go to the doctor but neither of us initially thought that it was more than slowing down due to age even though he was so fit.

His walking got slower and more hesitant. I used to have to trot to keep up and then suddenly I was faster.

On looking back he broke over time a few computer chairs plus the sofa and in the morning he would stand up and then sit suddenly down on the bed, we thought it was hypotension (sudden low Blood Pressure on standing). I kept saying go to the doctor. He started coughing after eating nuts and seeds, he stopped drinking moderating and went tee total. As his balance became off, he developed a rounded shoulder posture (this is classic Fail Arm Type MND)
The GP intitially thought the grip was arthitisis.

This was all over an 18 month period. But definately all through 2019, I was busy with a my parents and an intensive course but nothing would make hime see a GP, as all the doctors were concerned about was his high blood pressure, which was herediary and he refused to make medication for.

Once the obvious stuff was ruled out and the arthritis was dismissed as a cause, neurological was on the table.

Time line
From GP January 2020
Bloods obvious tests etc.
March 2020 seen by Rheumatologist thought it was a hand condition called Viking Disease
July 2020 seen by Rheumatologist again, the guy literally went white at the visable change in both hands, denied everything he said in march, that an op would fix it.
Seen for EMG that month, got cancelation for Neurologist on 27 July 2020, MND confirmed.
Genetic test showed no DNA markers

Moved to a different area for a ground floor place. Seen a different Neurologist in March 2021, said Fail Arm Type on sight.

I can't fault the health care much 6 months is not bad at all for a diagnosis but the changes were extremely visable. If the weakness had only been on one side I would have thought he had had a stroke but both hands/arms uniformly getting weaker was the puzzling thing to me, at that time.

I am putting this out there for the general information of the group.

In the hopes that it helps someone


Donna


Carer of Husband diagnosed MND in July 2020.

[TinyLady]

DeeH - thank you for sharing your husbands story. I found it very interesting to read and as someone who has found it hard to be listened to and diagnosed, I see similarities. In hindsight I really shouldn't have ignored my symptoms as long as I did xx