Is this ALs?

[Izzie]

I am here for help. I’m a 70 year old woman with some odd signs lately. About 4 months ago I started having pain in my right armpit area and the side of my breast. I went to my PCP and he could not find anything and sent me to my OBVYN. I had a mammogram and all was normal. Meanwhile pain was there. After a few weeks pain subsided. Two months ago the pain returned in same area and also pain began in my left calf thigh and up to my hip. This was pain but I kept telling myself it was psychopathic. Then beginning of November I felt pain in both sides of my body-armpitl, shoulder, forearm, calf, hip. The pain hurt so bad at night that I could not sleep. I took Motrin that helped and then a week before Thanksgiving I felt strange sensation in my left calf. It felt like little electric charges were going off in my calf. This is when I saw the muscle twitching and since then it has continued . I think my left calf is smaller than my right but I’m not sure. It happens everyday now and I have seen a few twitches in my right forearm and left forearm. I also feel the electric charges in my right lower leg and sometimes my foot. I again saw my PCP who did not really understand what I was talking about. He did order bloodwork. No results yet. I currently take levothyroxin, losartin, Prozac, and Crestor. I have an appointment next week with a neurologist.. I’m trying to hold it together. Also the pain has again subsided some. I hope I do not offend anyone. Any insight is appreciated.

 

[lgelb]

Hi, Izzie, when your main problem is pain, it's hard to be concerned about ALS. Twitching often precedes or follows pain, since it's often a sign of muscles that are not happy, but it's generally benign.

I expect the neurology appointment will be reassuring as regards ALS or anything like it. But do stop by and let us know how it goes.

 

[Izzie]

Thank you for the reply. I know y’all aren’t drs. Any other opinions out there as I am worried to death it’s ALs.

 

[Nikki J]

I am FALS. So i can draw on multiple family experiences plus my own as well as friends in the FALS and general ALS communities. Nothing sounds like any ALS i have encountered or heard of. You said you don’t even have your blood work back. I hope they tested for muscle inflammation from Crestor - common and reversible- which would be my first thought. Even if it isn’t that it doesn’t sound at all like ALS. Was the neurologist your idea? I am surprised the pcp didn’t wait for the blood results and if nothing found suggest rheumatology

 

[Izzie]

First I didn’t know I was only allowed a few posts and then I wouldn’t be able to post again for three days. Do I need to fill out more info? Just curious.
Here are my questions:
1. I’m seeing. Neurologist on Thursday and I looked up the information about her and she is stated as a fellow of neurology. Does this mean she is new and inexperienced?
2. If so should I cancel the appointment and try to get N appointment with one of the specialists at the als clinic or to your knowledge will I have to have a referral from a first seen neurologist?
3. Since my first post on Friday I am now having twitching in both calves and every once in a while my forearms. Is this progression?
4. Since I have been experiencing this for only a month should I wait until more time has passed? Should I ask for an emg as the twitching is more widespread? I still have no muscle weakness. But the new twitching is really scaring me. I have read the info provided by the forum before posting.
5. My bloodwork came back normal so what is the next step?
6. Am I seeing a neurologist too quickly (repeat of 4).
7. Are there false negatives on emg because a person went to neurologist too early in the process? This is my biggest concern.

I don’t know what else will pop into my head at 3:00 am about all of this but again I want to thank everyone for listening and responding.

 

[Nikki J]

1. There are two types of fellows. I suspect your appointment is with someone who is a fellow of the neurological association. This is given to an experienced doctor There are also fellows in academic programs who are doctors who have finished their neurology residencies and could be attending physicians but are doing extra specialized training. My experience at my clinic is they don’t make appointments but work with an attending. I have often seen a fellow for most of my visit but they report to my neurologist who then comes in and does her exam

2 it is not usual to go right to the ALS clinic without a emg or other reason and as we already said it doesn’t sound like ALS and may not even be neurological so a general neurologist is far more appropriate than an ALS clinic

3 twitching doesn’t matter

4. You should let the doctor decide. It isn’t too early to be seen but again doesn’t sound like ALS

5that is up to the doctors. You have an appointment see what they say

6 see 4

7 no.

Posting is limited early on. Just the way it is

 

[Izzie]

Thank you. I’ now having twitching in my hands and fi feel the electric zap that seems to precede new twitching. It’s moving up my body so I am really worried. My right elbow is twitching . Also my age fits the right category and I just keep adding more fire to my anxiety. Can you think of any other questions to ask the neurologist? I’m trying hard to be positive and I also hate how my poor husband reacts. I am seeing a counselor and keeping busy. Yet today I told myself this will be my last good Christmas where I am almost normal. I know all of this is irrational.

 

[lgelb]

It is irrational, but I understand it's real to you.
Lots of new twitching, zaps and the like all continue to argue against ALS.
Your age means nothing here. People in their 70s get all kinds of things -- many diseases increase with age. ALS is more often diagnosed in the 60s anyway. But you aren't describing it regardless.
Glad to hear you are seeing the counselor. When you start to worry, remind yourself that no one reading this except you likely is worried that you have ALS.

 

[Izzie]

I saw neurologist yesterday. She did exam and said I have to neuropathy and said she didn’t think I have ALs as in the period of time I have had twitches I would have many more symptoms. I have an emg on 1.10/24.ran all sorts of bloodwork and said no mri at this point. Please humor an old lady as I have concerns of neuropathy but the neurologist seemed not too concerned. Also did see any twitches and asked me to send her a video. I am relieved but also still worried about the emg. So keep your fingers crossed for me please!

 

[Nikki J]

The emg will include a nerve conduction study. They are virtually always done together. It is primarily the ncs that she wants because that will be where they would see neuropathy.

If they do find neuropathy your report will probably start this is an abnormal study. Expect this and do not panic. It is also possible that there will be mild issues on the emg. You might want to wait to have the doctor notify you of the results. If you can’t and end up posting here about it include the report with your name removed. We would need the tables and the summary to respond

Your symptoms certainly could be neuropathy. Again they don’t sound like ALS and it sounds like the doctor didn’t think so either. There is plenty on the internet about peripheral neuropathy. Find a reputable site like MAYO or another major medical center and read. It is unrelated to ALS and does not lead to ALS so you really should leave this site and be thankful

Good luck

 

[Izzie]

Thank you so much!

 

[Izzie]

Ok in response to the previous post you stated there may be mild issues on the emg. Could you explain this please. Also twitching is just now in my left calf. I feel like I am losing my mind. Still I tell muself that ALs only twitches in one place. Thank you for your insight.

 

[Nikki J]

It is fairly common to see signs of old injuries and wear and tear on emgs. Neurologists can tell if this needs any follow up and it usually does not. My point was that you should trust your doctor’s interpretation and not turn to mr google and decide some little niggle is a sign of early als