Looking for Direction

[Neil]

Hi all,
I hope you don't mind me asking for some advice.

Since January I started to experience some very different feelings with my body and having done the daft thing of plugging them into Google it threw back MND as a possible cause.

Through my GP I managed to get an early appointment with a Neurologist and the main symptoms that I outlined to him were:
- Feeling of weakness in right arm and right leg
- Fasciculations in both lower limbs and thighs, along with internal vibrations in other parts of my body
- Pins and needles in both hands and feet (I know that this is not commonly associated with MND)
- Initially right shoulder sore but I know have the same sensation in the left shoulder
- Pain in lower right back
He completed the standard clinical tests and I have had an EMG / nerve test and a MRI all of which came back normal.

Over the past month my symptoms persist and the fasciculations in my calves, especially when relaxed, appear to be intensifying. It goes without saying that this consumes a tremendous amount of my waking thoughts.

My follow up appointment with the neurologist has been delayed, but even when it is rescheduled I believe he will likely say that we just need to keep monitoring.

From anyone's experience can you give me any guidance on how I should prepare for the next appointment to try and arrive at a definitive answer / course of action or ask the right questions?

Any advice greatly received.

[nunhead_man]

Good morning Neil,

Welcome to the forum !

This is a worrying time for all of us and obviously isolation et cetera magnifies anxiety.

It took me about two years to get a definitive diagnosis moving through from carpal tunnel syndrome through "motor neurone damage" to motor neurone disease.

Certainly some of your symptoms sound like MND but given your EMG and MRI came back normal that does not sound like MND - but who am I to know? I'm not a doctor and cannot offer medical opinion.

My only advice can be the advice that I was given during the two years I mention which is to wait with trepidation to see what is the outcome of the process my body was going through. And if my medical "team" at any time said do this do that to either try to work out what I had or help me try and improve things I did it immediately.

Does this help at all?

[MNDConnect]

Hi Neil

I am sorry that you have symptoms that you are concerned about. Did the neurologist give any indication of what they thought might be causing your symptoms?

You mention a feeling of weakness. Did the neurologist pick up any clinical weakness upon examination?

Rachel
MND Connect Adviser

[Neil]

Good afternoon both,

Andy - thanks for responding. As i’m sure you know better than me it’s the uncertainty that gnaws away at you. It’s difficult to talk to anyone given that there is nothing visible (except for the twitches in my legs) and that there is no prognosis. So your advice is most welcome.

Hi Rachel - thanks for getting back to me. Some excerpts from the clarification letter from the neurologist:
- from the MRI: some degenerative changes in cervical spine which may explain some of the paraesthesia in my arms but not into legs and feet
- NCS / EMG: I only had quick chat with him about this, for him just to say the results were normal.
- no cranial or fundi abnormalities; motor examination was normal as was reflexes and planters; finger-nose and heel-shin tests normal; identified some reduction to touch and pinprick on both sides.
- no clinical weakness was discussed

When I met him the fasciculations in my legs were not as pronounced but I did mention it. Also the lower back pain, which has deteriorated, was not really discussed.

He didn’t really give a reason why it could be happening, potentially a shoulder muscle issue for my left arm. He said to leave it a couple of months to see what changes.

Apologies for the lengthy post but that’s the position I am in at the moment and I just want to be as prepared as possible. Any guidance would be greatly received.

Best

[MNDConnect]

Hi Neil

There is nothing that you have said which would suggest that these are symptoms of MND.

Fasiculations are not an initial symptom of MND unless accompanied by clinical weakness. This isn't a feeling of weakness. It's a weakness that can be measured upon examination.

The sensory symptoms that you are experiencing are not symptoms of MND. MND doesn't affect sensory nerves and so doesn't cause sensations such as numbness or pins and needles. These come from the sensory nerves.

Google is a wonderful tool except when it comes to symptoms. We are well aware that if you google twitching or facisulations, it will bring up MND but it is a common misconception that these are initial symptoms of MND.

Obviously I've never met you and I'm not a neurologist but there's nothing that you have posted that would suggest that this is likely to be MND. I hope that offers some reassurance. It is really hard once you worry about MND, to try not to worry about it! If you have any concerns or questions then please do feel free to give us a call on 0808 802 6262 and we'd be happy to talk these through with you.

Best Wishes

Rachel
MND Connect Adviser

[Neil]

Thank you Rachel.

I’m genuinely appreciative of your response. I’m not quite sure what the sensations are in my body, but as you say once you get into a chain of thought it’s often difficult to move away from this. Or least it is for me. I’ll probably take you up on your offer to have a chat with someone in your organisation.

Thanks for your time.

N

[Ellie]

Hi Neil,

I am sorry you are going through this.

I don’t know if it’d help to look at your symptoms logically and rationally by breaking down what you posted?

- Feeling of weakness in right arm and right leg
- Fasciculations in both lower limbs and thighs, along with internal vibrations in other parts of my body
- Pins and needles in both hands and feet (I know that this is not commonly associated with MND)
- Initially right shoulder sore but I know have the same sensation in the left shoulder
- Pain in lower right back

Fasciculations are sometimes seen in people with MND, along with other symptoms and issues, but none of the other symptoms you listed are presenting symptoms of ALS/MND.

He completed the standard clinical tests and I have had an EMG / nerve test all of which came back normal. .

That is great news - no clinical weakness and a normal EMG would not be found if you had MND. An EMG would yield distinctive abnormal findings which, together with clinical weakness and other clinical findings, would be suggestive of an MND.

- no cranial or fundi abnormalities; motor examination was normal as was reflexes and planters; finger-nose and heel-shin tests normal; identified some reduction to touch and pinprick on both sides.
- no clinical weakness was discussed

These tests are included in the other clinical findings I underlined above.

I think it’s a good idea to talk your fears through with MND Connect and I hope you get reassurance from them. Then you can focus on what IS causing your pains.

Take care and I wish you all the best.

Love Ellie.

[Neil]

Thank you Ellie for taking the time to reply. it’s greatly appreciated and I’ll definitely be taking your suggestion in contacting MND Direct with a call.

Even with the above responses I feel able to have a more informed discussion with the neurologist when my appointment gets rescheduled to try and get to the bottom of what is causing these changes.

Take care
Neil