Please Help Me!

[Rossi46]

Hello
Please can you help us?

About a year & half ago, maybe slightly more, my husband noticed he could not raise 1 of his fingers, now if he lays his hand flat on the table he can only lift one (very minimal) he also has weakness in his arm & wrist, these symptoms have been like this for some time and appear to have not got any worse. The muscle around the thumb & under the hand still appear normal

The muscles in his arm are slightly smaller, but he is still able to use his arm & pick objects up etc, he does struggle some times when lifting heavier objects but is still able to pick them up and use the hand as normal.

He had a MRI scan which showed there is a trapped nerve around C8 C7 T1 which I believe does control that hand, so I am praying that is the cause. If there was a trapped nerve could this be the cause of the weakness and muscle thinning.
Would a trapped nerve show on the EMG? (I have asked the specialists but they are not answering our questions)

We also have notice that his leg is 1cm smaller than the other leg and he has been having twitches (which I know twitching can be caused my many other things) (cannot confirm if his leg has always been smaller, but he thinks it has not) also if he was to stand on his heels he can hold one foot up but not the other (hope that makes sense) he has no problems with walking

He has also had pins & needles & numbness, I believe that is down to stress though.

2x EMG’s have been done and they have confirmed there is a problem but they do not know what it is.

Below is the letter we received yesterday, after 2nd EMG:

I am afraid it is still not possible to give you an absolute or definite diagnosis. There is however continuing concern that nerve supply to muscles not just in your right hand but in other areas may be impaired.
The electrical test identified impaired nerve supply to muscles around the right shoulder and in the right leg in addition to the area where we have observed thinning of the muscles in your right forearm and hand.
I know in previous consultations and communications the possibility of Motor Neurone Disease has been raised and I am sorry to say this remains a possibility although on the basis of assessments and investigations to date cannot be confirmed definitely

As the specialists don’t know what is happening and they are not answering any of our questions, we are both very stressed & confused. I feel like I have nowhere to turn and I’m at breaking point, please can some one share some advice with us?

Thank you so much x

 

[Nikki J]

Welcome I am sorry you are here. It sounds like you are in the very nasty place called limbo. It sounds like whatever they are seeing does not meet the criteria for MND- a good thing. Do you have appointments for follow up? Sometimes it is wait and see and another EMG in a certain number of months. Not knowing what they are seeing it is hard to say but sometimes these iffy EMGs get better. Are you seeing a neuromuscular specialist? You certainly should be and if you are not you need to make that happen ( and I do understand you are probably dealing with the NHS)
Now the really hard part. If you have been given follow up and are seeing an appropriate neuromuscular doctor there is not a lot more to do except try to relax. Worrying will not change anything and will make you miserable. Now is the time to do all those fun things you keep putting off. If it is MND, heaven forbid, you will be glad you started doing things early. If it is not you will still be glad as you will have learned to live in the moment as everyone should

 

[Atsugi]

There can be hundreds of illnesses your husband is suffering from. Only a couple are fatal like ALS.

ALS is a diagnosis of exclusion. That is, it's not ALS unless its nothing else, so it sounds like you still have more tests to go through, to rule out everything else. There is no test that directly measures ALS itself.

I think most doctors don't communicate well. After all, they know we can't possibly understand everything they say. So often they don't even try to tell us what they're thinking. If I were you I'd continue to search for a MND specialist who will answer your concerns.

 

[Rossi46]

Thank you so much for your reply's, he has a follow up appointment in 3 weeks time so I am praying we get some more info. The hospital where he had his EMG specialise in mnd/als but they just keep telling us they don't know what it is a year & half on, i will ask when we see his consultant about seeing a neuromuscular specialist

thank you again I really appreciate you help

 

[cheerleader]

Many of us have played the waiting game and know it is difficult! It took 2 years for my husband to get a diagnosis! As Mike said, it could be many things, so enjoy your life and try not to worry. Easier said than done!

 

[MaxEidswick]

>Are you seeing a neuromuscular specialist? You certainly should be and if you are not you need to make that happen ( and I do understand you are probably dealing with the NHS)

this is critical!

 

[Rossi46]

Yes we are using the NHS and finding it so heard to get any help or info from they, I will ask to see a neuromuscular speclist asap, trying to stay strong but some days I have a wobble and get upset..I know I have to stay strong for him! thank you so much for all your advise I really appreciate it

 

[MaxEidswick]

>I will ask to see a neuromuscular speclist

demand or escalate the referral request. not a vet are you?

 

[Rossi46]

No not a vet..the follow up appointment is in 3 weeks so I can request a referral and if I'm still not getting anywhere will have pay and get private medical advise..Fingers cross

 

[MaxEidswick]

try:

King's College Hospital MND Care and Research Centre
Department of Neurology
MRC Centre for Neurodegeneration Research
Institute of Psychiatry P 041
London SE5 8AF, UK
Tel: +44 20 7848 5192
Fax: +44 20 7848 5190
Neurologists: Professors Nigel Leigh, Christopher Shaw, Ammar Al-Chalabi, doc Cathy Ellis
Clinic coordinator: Emma Willey
Consultant Nurse Specialist: Mary-Ann Ampong
[email protected]

 

[Janbrit]

Hi Rossi, I was referred to Kings after Canterbury specialists suspected ALS but had had a clean EMG, saw Prof Shaw end of July and he thought it was muscular and referred me to Dr Norwood who is a Neuromuscular specialist at Kings, just 4 weeks later I saw her but by that time the EMG was not good and she diagnosed ALS. Waiting is the worst part but 3 weeks is not so long, hopefully you will get Dr Norwood, she really is lovely and knows her stuff,she won't leave you wondering. Also try to contact the patient laid on service at Kings and ask to see copies of letters passing between the various departments and let it be known that without a finite diagnosis of whatever it is you cannot move forward. Hope this info helps

 

[Rossi46]

Thank you Janbrit & MaxEidswick you have been so helpful I will follow this up & keep you posted

 

[skipper66]

Rossi,
Wish I could give some advice or help. Unfortunately, I'm not as knowledgeable as the others on this. I just wanted to let you know that I hope you get your answers soon and I will add your husband and you to my long prayer list. There could be many things going on other then ALS so try to stay positive. I know much easier said then done. We are here if you need us. Hugs, Kim

 

[Rossi46]

thank you so much skipper66 your kind words means so much to me x

 

[Kosmoskatten]

As previous posters have said, see a neurologist specialised in MND and neuromuscular disorders.

You should also see to that you get copies of your husbands EMG reports. That way when referred you could get some indications from the specialist, even though he/she will most likely repeat the EMG.

Best of luck!