Diagnosis

[Anne123]

Hi you all,

First of all a lot of respect for the people here.!

I am waiting to get a diagnosis of my symtpoms that starten 2.5 months ago. So far as i noticed.. maybe longer buth i didnt noticed.

Started with strenght loss in my right upper arm.. and fasiculations in my legs, belly and other places. Not in my arms. They started a few days ago in my arms .. Soon after the noticed weakness in my upper arm a heavy kind of feeling was pain in my legs what made standing a long difficult.

Also my left arm starded to get weaker. I noticed it in the things i do with my children and the household. I can not vacuüm without the problem of my arms just shake and becoming sore. Also with gripping stuff ore push they shake like crazya and i notice in a lot more 😔in rest the soreness goes away.

My legs are the strongest of my whole body right know. And dont feel heavy anymore. Buth they are weaker as before. Also my back is killing me with muscle pain and also fasiculations. And i have a kind of lumb in my throat that goes away when i eat something and comes back a few minutes after. I am out of breath really soon😔

My general health is not the best i have crohn and some more diseases. For my crohn i use imuumsepressa medication and i red that with this kind of medication the risk of this nightmare doseases is bigger.

So a lot of symptoms in 2.5 months. Everything still works buth with a leess amount of strenght thats becoming worse ass time passes.

i had a clean mri, no higher levels of ck. My clinical appointmont showed no clinical weakness besides the shakeniss of the arms. Also normal relfexes 3 weaks ago.

Today i had my emg and i will get the results in 2 weeks. I hope i dont get a call sooner..

I am absolutely terriefied .. i can barely look at my oldest without having tears in my eyes when he comes running look mommy look. I cannot bare the thought of having this disease that wil taken the memories of myself away from my children. I know that there can be a lot of diseases that causes this symptoms.

Buth the increasing weakness and fasiculations are scaring the crap out of me. And stress does not make is better.

I hope that the diagnosis will Come soon.. the sooner the better. Buth musclediseases are hard to catch.

Much respect for u guys how you cope everyday. I read a lot and you guys are inspiring to me. 🌹 when the outcome is darker as the night i know that i can find here soms Light!

[MNDConnect]

Dear Anne123,

I am sorry to hear how distressed you are that the symptoms you are experiencing might be those of Motor Neurone Disease.

If you would like to speak to an MND Connect adviser, please do call our helpline on freephone 0808 802 6262, we are here to support you and can try and answer any questions you may have.

Our helpline is available 9am-5pm Monday to Friday, sometimes it can help to talk to someone about your fears.

With kind regards
MND Connect

[Anne123]

Thank u,i will do! Dont want to bother my husband to much. A difficult time. With a lot of waiting because the symptoms are still mild.

[Oliveroldc]

Hi Anne, so whats the update, did the neuro techs tell you it was mnd?

[Anne123]

Oliveroldc .. my appointment is next wednesday. =( i can barely hold my anxiety. I called the hospital if they had a appointment sooner buth no ..Meanwhile my right arm is almost popping of my body of the fasculations. They are so brutal and making me very nervous sometimes the will last minutes. The fasculations on the rest of my body are not so brutal as my arm. I read a lot that mnd dont affects multiple area's when onset.. buth i have really no clue what else it could be.. buth we need to wait and see. When there is a bad result i will ask a second opinion in hospital somewhere else. They specialize in mnd. And u get in a day all testing done with ad the end a diagnosis. I need answers because i having a hard time looking at my children without crying. Good or bad we need to keep going buth then you know.. and now you keep searching for what i could be😔

[Piglet]

Anne123 good luck for next week.xx

[Anne123]

unfortunately the emg was not clean. they have found vibrations and fasiculations in both arms. the doctor wanted to redo the clinical exam because of increased symptoms. And found clinical weakness in my shoulders/arms ( 4/5 )

Now referred to a special hospital that specializes in ALS. Because the neurologist did not have the specislism in mnd. I thought he had.. buth he said that they dont see that kind of symptoms enough to make a proper diagnose.

He told me to keep an open mind, and take everything in considering. unfortunately the waiting time as it seems now is another month and the appointment will not be scheduled until January. A least that's what the neurologist thought because of the holidays. Buth we hopefully will know more when we had the appointment in Utrecht because they do all the testing in one day!

So the rollercoaster continues for a while. I do know now that we will get everything out of every day and take nothing for granted. I am sad thinking about my sisters and mother en brother.. We've been through so much lately. my father who suddenly passed away 4 years ago, my brother who is very ill. And now this. My poor mother who has to go through all this alone 😔

[Oliveroldc]

Sorry to hear this Anne, what are the vibrations they saw? Is it fibrliations?

[Anne123]

Oliveroldc oh dear🙈 long live the automatic correction on my celphone. I'm from the netherlands so my Phone doesnt always regonize the words!

Buth yes fibrillations where found. He told me that they can occur in inflammatory and dystrophic muscle diseases also on the emg buth the fasculations not. So that was a big shock becauses it rules out a lot of muscle diseases.

[Oliveroldc]

Sorry to hear Anne, how are you coping?

[Anne123]

Oliveroldc sometimes i am oke and enjoy everything what the days brings. And sometimes i am down, mad.. thinking why me.. why always people that dont deserve this.. let people who are hurting people suffer and not good people.

When i Am alone if the kids are in bed, ore if i need to go to appointment fore my crohn and stuff. Those hours are the hardest because you feel everything more than when u are busy..and then i am thinking ;; my sons wont regonize my ore remember me and that makes me really sad.. buth hey i am still here and i dont heard the officiel diagnose yet.. so we need to have a little bit of hope.. and a lot of denial at the moment.

Buth the thing is also.. i can not begin a discussiom with this disease if it turns out to be mnd.. so why try it then.. the only thing that you can do is enjoy what is left..and hoping like so many that there will be a cure maybe1..and things want progess quickly.. ( i am weak all over ) i will post again when i have a date or had the appointment. I am going to focus on my little boys now and enjoy there little smiles☺️

[Oliveroldc]

So sorry to hear Anne123 wishing you a slow progress

[Johnny5]

I think the worse part of it all is waiting for a correct diagnosis. I was diagnosed with Benign Fasciculation Syndrome, then they thought I had a chemical imbalance in my brain, and after that, they said I had cervical myelopathy. Finally, the Doctors settled on "we don't know for sure". Over many years, I struggled with this because my progression was very slow. After 4 years, they finally diagnosed MND and sent me off for a second opinion which took another 2 years.

Mindful meditation might be something you could use. Helps to keep anxiety and stress down.

Here is a helpful Q&A on EMGs that may help. They are incredibly complex and it is easy to get lost trying to understand them.

I will also link you to the Westerly University Neurology Department public site that breaks down a lot of neurology information. I was amazed at how many different conditions a neuromuscular specialist deals with. But the truth of it all is that for us on this side of the road that gets these symptoms, education is king and it will dispel fear. Hope this helps.

[Anne123]

Johnny5 what a hell of a ride did you have .. in Total 6 years for a second opinion. Dang.. i am gratefull that we have a centre here that does al the research and testing in one day. Its specialized in mnd..

I will have my appointment on 9th of january there. It wil take up a whole day.. buth we hoop that we will get some answers then.

As far i noticed i have more muscle fatique everywhere, since a few days it takes a lot more effert to chew big things and feels like i chewed to long on a bubblegum . Its so weird. Somewhere i have still hope buth sometimes i loose it al.

Its indeed a difficult process to wait, wait wait and wait. And there are indeed so much different neurological diseases.. some people curse on there neurologist buth its so hars because there are so many mimics ect.

I will Get deeper in to the links that you shared! I am always open to information also because i work in the healthcare myself!

Thanks for your time to respond and i hope that your progression stays so slow!

[Johnny5]

When this avalanche comes down on you it is easy to get depressed. With a family behind you, be aware of what this is doing to your mental health. Keep a positive outlook and keep joy and happiness in your heart. I read an article about how brave pALS are long ago and it stuck with me. We are all going to die, no question about that. The only real control we have is the way we look at it. We leave good or bad impressions everywhere we go. I choose to leave the good ones because folks will say what a kind and caring person I am, or he was such a happy guy. It is like a light shining on a hill. If you put it under a basket and are depressed, nobody will remember your light, but if you hold it high and let it shine, everyone will.