Wait and see approach

[Sammbie]

Hi Everyone,

It's been a while since I've last posted and not a lot has changed since (diagnosis wise).

I really don't want to bother you with a huge list of symptoms, nor do I want to come across like a huge worry wort, when my concerns are many of your realities. So I'll try and keep it as short as possible.

So far, I have upper motor neuron signs (pyramidal signs), positive babinski in left foot, right is negative, hyperreflexia, positive hoffmanns on left hand. Significant atrophy of left hand, in particular the thenar, mild to moderate atrophy of the left arm, except bicep. (So I look like Popeye). I also have clinical strength loss 4/5 in both left arm and leg. I have also recently lost the ability to spread any of my left toes, it was initially just 2 toes but now it's all of them, I can move up and down but no movement when I try to spread them.

I also have fasiculations in both sides. I've noted that I don't have them all the time, I can go a week or two without noticing anything but this week they've become more than annoying. I feel my bodys popping and have the same feeling I got with restless legs when I was pregnant.

So far, I've seen a neurologist and a neurosurgeon since Dec last year. MRI's are normal, slight prolapse disk but nothing that would cause the symptoms I have. I also had EMGs and nerve conduction tests, I only have a verbal report starting that the nerve conduction tests are normal. No mention of EMG test. My neurologist has left the NHS and I'm waiting for a new one, which could be sometime yet.

Not even my neurosurgeon could access the EMG report, so he has formerly requested it and won't discharge me until then, when ever then is! I'm glad he has though, hopefully there's more insight soon.

So this is where I am, waiting patiently for a new neurologist and for my EMG tests are located.

So my questions, as the fasiculations have increased in intensity (if I can I'll attach a video I took today) and the loss of ability to spread all toes. Should I push harder to see someone or just as I have, ignore the annoyances, and wait as my GP recommends I do?

I have a feeling that as there are no EMG results yet and doctors and neuros are only taking my word about the fasicilations intensity increasing. they presumably think I may be over exaggerating, so I've taken to recording them.

Here's a link to a video I took this morning of my "good arm". https://drive.google.com/file/d/0B8fstAn2khPccHdRdkM2c2hPQjA/view?usp=drivesdk

Any advice would be greatly received.

many thanks.

Samm

 

[KarenNWendyn]

I would suggest trying to find a neurologist out if the area since you'll likely want a 2nd (or 3rd) opinion anyway. It can be one at the nearest academic medical center.
Good luck.
Karen

 

[Sammbie]

Hi Karen,

Thank you for your reply.

I've been told by my GP that there is a national shortage of neurologists and none in our area. The joys of the UK's NHS.

I just have to wait it out and try not to worry too much. Most days I just get on with it because I have to but on those odd days when I've pushed myself too much and it's harder to ignore the weakness and fasiculations I have fleeting moments of panic to what the future holds. That's when I try to reach out for support and a bit of understanding.

Thanks again for your response,

Samantha

 

[WendyWooG]

Oh Samm
It's rotten that you are being kept hanging on like this, I am so sorry. I would keep pushing your GP. He really should refer you out of your local area if they can't fill the position. You could try ringing Shrewsbury hospital to see if they have a neurologist on staff if they do ask him to send you there.

Hugs wendy

 

[Bestfriends14]

Hi there,

I'm so sorry you are going through this and I would recommend you push and make all the noise you can. Is there a possibility of going private there?

The same thing happened to my hubby with his initial EMG report in Jan 2016. He was told that he was fine, even though he started having bad drop foot and then poof! They lost his EMG report for 17 months. It was only after he paid to go private in early 2017 because he could no longer walk on his own without a brace, that he got the correct diagnosis and they found his initial EMG report, which actually showed evidence of MND.

Three more EMGs and three neuromuscular specialists did confirm ALS diagnosis.

Do make noise, do ring them again and again, and get in their face for help.

 

[Angiegal]

Hi Samm
Sorry for the issues you're having. Keep on your GP. They do say that the squeeky wheel gets the grease!
Hugs

Angie

 

[Sammbie]

Thank you everyone for all your responses, they're very much appreciated. I will push harder and keep on until I get somewhere.

Thanks Wendy, I've been told the waiting list for neurology in my area (Shrewsbury & Telford) is 18 months.

I did go out of area but seems like they are short too now the neurologist has left. I'll ask my GP to open up all areas again and see if I can be referred elsewhere. My GPS are good and understanding but can't do more than refer me. One sent me to local hospital and I got kicked out because I was under another area.

Thank you Bestfriends, I'm so sorry you've gone through a similar situation. I thought I was the only one that reports go missing on. I wish I could go private but it's just not an option at the moment. I saw my neurosurgeon at a private hospital under the NHS, within 2 months he had concluded there's nothing surgery can fix. If my situation changes, going private would be my first action.

Thanks Angie, I will follow everyone's advice and start making some noise.

Thank you,

Samm x