Confused and scared - any guidance much appreciated

[HL93]

Hello all,

I first want to extend my sincere appreciation for the support offered on this forum. I don’t think I could show the bravery, class, and kindness that many of you display so well in the face of adversity. Please know that I am so grateful simply for the opportunity to express my concerns.

I have read the “must read” guidelines for this particular forum, and those guidelines have offered me some peace of mind. However, my mind is still reeling and I am incredibly scared.

I am a 24 year-old male. I understand that my age does not fit the profile for ALS at all. Still, I have major concerns.

For the past two months, I have been experiencing widespread muscle twitching in virtually all areas of my body. It has been accompanied at times by strange, non-specific sensations in my arms, legs, and upper back. I have had pins and needles, which I know points away from the disease, but lately I have noticed that I am putting more pressure on my left leg, and it is sore as a result. This has happened once in the past, but it leads me to speculate that I may be compensating for some sort of weakness in my right leg. Twitches in the calves and knees of both legs have been regular but not constant.

In addition, I have noticed myself dropping things more often. Not heavy things; more like pieces of paper or my phone. I have not noticed a loss of general strength. However, I could not tell you what clinical weakness even feels like, because I have no experience with any of these symptoms other than the left leg soreness.

It should be noted that I tested positive for rheumatoid arthritis factor in blood work about a month ago. The nurse practitioner who had taken over for my GP referred me to a rheumatologist, but I could not get an appointment until October. I asked about a neurologist and she said I could go, but she doesn’t feel that it’s necessary. Also, I struggle with general anxiety and mild OCD, and have been under a great deal of stress in general.

In any case, I have an appointment with my GP next Friday (he started a new practice). I don’t know how to make sense of these symptoms, and I am really scared. Any guidance one way or another would be greatly appreciated.

Again, thank you for all you do. If I can take one positive out of my recent worries, it’s that I have been able to learn more about this terrible disease and find new ways through which I can contribute to fighting it through research and awareness.

Gratefully,
Chris

 

[IgorZilio]

How high were the levels of RF? Rheumatoid arthritis can lead to difficulty in performing activities of daily living, like dropping things if your hand is affected. RA affecting knees may weaken the muscles and the joint structure can become unstable. Twitches are just a common thing, especially with anxiety.

Clinical weakness doesn't feel like anything - you just can't do things you used to. Not something usually associated with soreness.

 

[HL93]

Thank you so much for taking the time to respond. My RA Factor is a 41.4. Like I said, the earliest appointment I could get with a rheumatologist is October, so I’m kind of in the dark in that area right now. My fear is that, from what I understand, RA presents symmetrically. My symptoms, on the other hand, have been random. The left leg soreness, the upper back pain, a sore feeling in my right shoulder, etc. Today it’s my right thumb. I am certainly not afraid of the soreness, as I know it is not at all indicative of ALS. Instead, I fear that the soreness is compensation for muscle weakness in other areas that I can’t even identify. Combined with the regular and random twitching, my anxiety has been at a constant max for weeks.

Thanks again for your help. I really appreciate it.

 

[Nikki J]

Igor is correct with his statement about soreness. Soreness does not indicate clinical weakness. Failure to be able to use a muscle does but even then needs confirmation from a doctor

Your comment about random locations is also inconsistent with ALS even if soreness were a sign which it is not. ALs begins in one area and spreads.

 

[HL93]

Thank you so much for taking the time to read my thread and reply. I really appreciate your help.

 

[IgorZilio]

It can present asymmetrically, with some tendency towards symmetry over time (especially with positive RF). Unfortunately, a rheumatologist appointment seems to be exactly what you need, the wait is really insane.

You're describing feelings, many of which could be explained by strained muscles from stress and anxiety. And inconsistency of symptoms/locations where they present. In ALS you'd have weakness once in one area and never any improvement in symptoms. I don't see in what you describe this weakness associated with ALS - the inability to do things.

 

[HL93]

Igor, thank you so much for your thorough explanations and the time you’ve taken to alleviate much of my apprehension. I am really grateful and wish you all the best.

 

[KarenNWendyn]

Regarding the rheum appointment in October —- consider calling that office and asking to be put on a cancellation list for an earlier appointment. Cancellations happen all the time; you may get lucky.

Regarding rheumatoid factor — this test is somewhat nonspecific. A number of conditions can cause elevated rheumatoid factors including other autoimmune and inflammatory conditions, and hepatitis C, to name a few. The anti-CCP antibody is more specific for rheumatoid arthritis. But even that diagnosis is made on clinical grounds (history and physical) with blood test results supporting a suspected diagnosis.

Nothing in your post suggests ALS. Congratulations and good luck to you.

 

[HL93]

Thank you so much for the information. You really have given me more clarity regarding this issue. I will definitely give the rheumatologist a call. In the mean time, I can now approach this a little bit more rationally now that I’m better informed. I wish you all the best.