Help with symptoms

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ConcernedDad

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Hi,

I am a 36yo male who has started having concerning symptoms and is currently going through diagnoses. Nothing seems to add up so far so i was wondering if i could get some opinons and advice from anyone willing to help? The onset of symptoms and progression is strange but i will try to keep it short.

I'll start from when i started to see a doctor about something seemingly unrelated.

6 months ago i was playing soccer and had a sudden pain in my ring finger. It hurt so much i looked around to see what I had hit it on but no one was near me. I let it go for 6 weeks but it didn't get any better, if anything it was a little worse. So i went to a General Practitioner (GP) The first thing the GP asked was if i had Rheumatoid Arthritis in the family. This through me off as i wasn't expecting something of that caliber. Anyway the answer is yes my mum was diagnosed with it and also fibromyalgia. He sent me for blood test all didn't show anything so he said lets just wait and see as it can show up later. I talked to my mum about it and she said she has seronegative RA and 20 years later it still doesn't show up on blood tests, no inflammation or any other markers. She said her diagnoses took 6 - 8 years and she was diagnosed at 42 which would mean she was around my age when symptoms started. With this knowledge i went back to the GP and got some x-rays and ultra sounds done. All they could find was a metallic foreign body in my wrist which is probably from metal work with my job.

One Blood test had high Urea in it so i asked what that was and he said he wasn't worried as i am an active person. I said i haven't been active lately so what is it if you aren't active and he said muscle wastage. I then asked the question if there could be something degenerative going on like MND and he said unlikely but not impossible so he sent me for another blood test to look at CK levels. On the way to the blood test i had my first ever panic attack, it was like and out of body experience. The next night i started getting electric shocks under the skin all over my body and tingles in the top of my forearm. The next day i wanted to lay around but my wife made me do park run (5km hilly run) as she said i needed exercise for the stress. The next day after park run i get wide spread fasciculations mainly in limbs. Two days after park run both my forearms go really tight on the extensors and look really toned. I called the doctor and he got me to start having berroca (B vitamins) and magnesium to see if that helped but 7 weeks later no change.

6 days after my arms went tight i got into a Neurologist for nerve conduction studies, EMG and reflexes. That come back fine (see attached). I saw the doctor the next day who done strength which was fine and reflexes which he said was on the hypo side. The GP then sends me for MRI of brain and spin plus a stack of bloods which all come back fine. Then he sent me to a Rheumatologist to see if they would have had any "bright ideas".

Rheumatologist sends me for hand MRI more bloods but essentially finds nothing. The finger pain is still there and 3 months ago it went into my pinky as well. Rheumatologist does reflexes and strength and says he doesn't think i have mnd but that my first neuro consultation wasn't a full one and to ease my mind i should get a full consult (not sure what a full consult is compared to the first consult). I also let him know about my mums history but he seemed dismissive of that.

It's around the 3 week mark since tight forearms and i had three really dizzy spells where i have to sit down. The first time i was just at home and had to sit before i fell and the next two was while i was walking. Never had these before.

It's about 4 weeks at this stage since the tightness started and it hasn't gone anywhere. It just ranges from mild to moderate to really tight depending on the day but never goes completely. And now my throat goes tight.

5th week the GP then diagnoses me with fibro and puts me on amitriptyline 10mg to help with sleep and stress. The next morning after my first tablet my right arm seizes up for about an hour, I could hardly use it (not sure if related to tablet or tablet exacerbated something). Sleep really improves. Tightness in arms and throat still there. Fasciculations aren't as obvious now, normally only feel it if i am already touching it or looking at that area. Also i'm noticing more fasciculations in trunk, neck / proximal areas.

6th week i go back to the Rheumatologist who gets frustrated that GP diagnosed me with fibro. He said that is his specialty and i don't have it and i am to stop taking that medication. He bases this off the fact that i got dry needling of my forearms a couple of weeks ago and it relived the tightness for about 3 days before it come back again (i have been doing massages and stretch classes to see if it could help with the tightness and stress). He said dry needling can't do that with fibro. Reumatologist asks if i went for a "full mdn consult" and i said no as i don't think i've got it due to no failures and there is some pain in the muscles when i left things (i have been reading this forum since the symptoms began). He said that i have to go and get a full consult as it would be silly to ignore.

At this stage I change GPs as i was frustrated at the old one. The new one is happy to write the referral for mnd consult. She checks my reflexes and says the same thing "if anything they are Hypo". GP also send me to a physio to get his thoughts.

4 days of not taking the amitriptyline and i haven't had a good night sleep, probably only 4 hrs a night. Wife begs me to start taking the amitriptyline again so i do. The next day around lunch time my right arm seizes up again but not as bad as the first time and my swallowing changes, the base of my tongue feels like it's not doing its job but i don't choke and my speech hasn't changed.

7th week, Physio says he can't see anything that leads him to believe it's an overuse injury or tennis elbow so not in his ball park. He does reflexes and says the same thing as everyone else (if anything hypo). He also does strength tests with measuring gauges and he notes that my dominate side is weaker then the left. 4 kgs different on the grip test and 4 kgs different on the forearm extensors (flexing my wrist up). I also noticed that after the strength test on my left side my forearm starts fasciculating. He doesn't think the tightness is spasticity as it doesn't seem velocity dependent but he said its not something he deals with.

8th week go back to physio, reflexes the same, strength 1 kg improvement on grip and forearm extensors but same difference side to side. He then also measures my forearm size and the dominate forearm is half a centimeter smaller then the right. He said that isn't usual but will keep an eye on it. Same thing happening, fasciculations less noticeable but still there, tightness goes from mild to moderate to really tight depending on the day in both forearms and throat. Swallowing issue is also the same.

MND consultation is booked for the 15th of December. Obviously worried sick.
 

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lgelb

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Just because no one can shine a light on The Diagnosis [and there may be none, or more than one] does not mean that MND is still in play. From what you say and the EMG that rules it out, I don't see how. So I expect your consultation to be reassuring as regards ALS.

BFS, as the EMG notes, is a real thing, and so is mild neuropathy, which can often be helped with home exercises and physio (of whom there is more than one, so if yours says you're not in his wheelhouse, find another). Honest docs can disagree, but if you don't need the amitriptyline, there's certainly no reason to take it.

I don't know exactly what the BUN abnormalities were but they can relate to dehydration and stress, as can the rest of your issues, like dizziness. So finding a good GP you can trust, who can help you safeguard your health, is a sensible move. But the self-care and monitoring that can help you identify what else goes with that -- what we do on our own hook often makes all the difference.

Best,
Laurie
 

affected

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Hey mate, I really don't read anything even remotely typical of MND in all the stuff you have gone through.
If anything, it's been ruled out more thoroughly than lots of more common things, and there have been some quite solid indications of exactly what is going on.

If you trust this new GP, it is time to stay off the internet and let the doctors do their job.
I hope you get some paths back to health soon, a good GP is gold.
 
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