Am I being silly?!

[Guest]

Hi folks.

I have been experiencing various symptoms for a long time now and am one step away from a diagnosis of M.E. I have seen a neurologist, rheumatologist and M.E. specialist. Everyone seems to think I have M.E.

I'm worried it could be something else, like ALS, and I wondered if you could let me know your opinion.

My symptoms include the following:

• Pain (often in upper and lower back/abdomen but in lots of other places too)
• Extreme fatigue (very difficult to brush my teeth/hair, get out of bath etc)
• My arms “don’t work”
• Clumsiness (dropping things – arms doing their own thing!)
• Muscles ‘twitching’ including my tongue which has been fluttering constantly for the best part of a year
• Sleep problems
• Confusion – memory problems
• Inability to cope with stress
• Feeling of pin pricks on palms, soles of feet and tongue (not painful, just strange)
• Awful headache brought on by emotion
• Tinnitus
• ‘rushing’ noise in my ears when I stand up
• sore throats

and more recently, right sided facial paralysis and slurred speech.

I am probably being silly because, as I've said, I've seen lots of doctors. I've had an MRI, CT with contrast and about a million bloods!

What do you think? All comments (even "stop being so silly" very welcome!)

 

[Guest]

I also shake a little and am often unsteady on my feet.

 

[Guest]

Have you had an emg/nvc? Or Eeg or muscle biopspy? I wouldn't call you silly. I would be concerned also. I don't know about als so I won't give advice on that. Right now your condition could still be anything. I hope you get answers soon. I wish you peace.

 

[Guest]

Just remember ALS is a subcategory motor neuron disease. There is normally no sensory nervous system involvement. That doesn't mean this compilation of systems is not something, but we experience weakness 1st and anything that "tingles or otherwise something else. Good luck!

 

[Guest]

Thank you both for your replies.

I have had some nerve conduction studies carried out. I don't know exactly what they were but they involved needles being inserted into my arms and legs. Does that mean anything to you? I've lost track of what I've had to be honest but every test I've had has come back clear.

I also had a heart ultrasound because my breathing is laboured and I have a heart murmur. Again, it was clear.

I'm a little scared to be honest.

Thank you both again.

x

 

[Guest]

Yes they poke needles in your muscles and then put electricity through the needles. The doctor should have explained it to you and given you some results, such as a neuropathy or muscle weakness or the all clear. From what I've read here on this forum if the emg is good then it is not als. But don't take just my word for it. All I can say is go back to the doctor. Don't give up hope and don't let the fear consume you. Sometimes it takes a long time to figure it out. It took 5 years to get my diagnosis. Good luck and try to enjoy your holidays.

 

[Guest]

Thank you Vicki x

 

[Guest]

You're not silly, neurological issues are often complicated and the fact that all your tests are clear is certainly a good thing but it doesn't mean that your symptoms are all in your head. I'm in the same situation you are: lots of symptoms but tests clear so doctors said we've to wait and see. Try not to worry ( for me not easy at all ) I think time will give us answers. Good luck and greetings from Italy

 

[Guest]

Thanks kiara x

 

[Guest]

What is M.E.?

Why don't you think it's whatever that is>

I'm guessing it's a fancy name for Chronic Fatigue Syndrome...

And since I was thinking Fibromyalgia...I'd really pursue that. Fibro causes 90% of the symptoms you have listed there..and believe me, it can be debilitating.

 

[Zoid]

Silly?

No, I don't think you're being silly. If you feel something, then it's valid. You just have to find the cause. I know it feels weird to go to a doctor with what appears to be a laundry list of random symptoms. I've been there. I've done that. I have had the rollercoaster of feelings associated with it. You just have to do it. Don't ignore a symptom just because you think it may be silly.

 

[Janet L]

I'm not sure, what is M.E.?

Regarding ALS, that's a very serious disease and you should visit your doctor for the appropriate testing. Fibromyalgia on the other hand is much more difficult to nail down a diagnosis for.

 

[bigbigfan]

Have you ruled out poisoning or alergic reactions yet? Bloodwork is a must because if you are being poisoned, or have been, the symptoms will be much like you describe but might end your life much earlier. Slow organ failure from poisons results in very similar symptoms to FM.

 

[dagscot]

I probably hesitate joining forums such as this as I fear I'll become a bit of a hypochondriac but I'm also unsteady on my feet and have chronic aches and pains in my body.

 

[Izac Joz]

Silly? No you are not. if you feel pain and all these symptoms, then like hell, you shouldnt feel silly about all these.

From the sound of it, I honestly think it has something to do with either FIBRO or a neuron disease. For that matter, though I donot doubt if this is a degenerative disease, it is always good if you can keep your tabs on it appropriately. And dont worry, most of us are here to help out, should you feel anything