31 year old new mom- twitching, cramps, recent visit to ALS specialist at Hopkins

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Molly1940

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Hello everyone. I should start off by saying what a wonderful support group this seems like. It is truly great to see people from around the world supporting one another in the fight against this terrible disease. I am a 31 year old female with widespread fassiculations that began in November 2014. I also have significant cramping that comes and goes in my fingers, thighs, and feet. I have what I feel to be weakness or a very heavy feeling in my arms. All bloodwork has been fine- lyme, vitamin levels, thyroid, ect. MRI is clear.

I had a an EMG that is clear. Neuro said I had a normal exam. The neuro at the ALS clinic I went to (referred to by primary neurologist) said no ALS at this time. I should also add that I have had tingling sensations in my face and extremities since December 2013.

The doctor said Cramp Fasiculation Syndrome was what he was leaning to as far as a diagnosis but took several skin biopsies which I am waiting for the result on. I asked if Cramp Fasiculation Syndrome was a precursor for ALS and he said no. I guess I am now questioning what “no ALS at this time” means. I have found some conflicting information on the internet as to whether CFS can be an early sign of ALS.

I would love any insight. I have a four month year old (completely normal pregnancy) and I am worried and scared. I have had a clean bill of help up until Dec 2013.

I am sending prayers to all that have this horrible disease or have symptoms that resemble it and do not have a diagnosis.

Prayers and hugs. Thanks in advance for your input.
 

Nikki J

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Well the straightforward answer is call and say when you said at this time it frightened me. Please tell me if you think I am at increased risk for ALS in the future.
It is likely that this is a standard phrase meant to cover himself as no one is immune from ALS developing at some point
The skin biopsies are to look for other things that might cause your symptoms

The ALS doctors at Hopkins are brilliant. If one of them said no ALS you are good
 

ECpara

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You are safe and ALS free, how wonderful! I agree with Nikki, his phrasing was just a standard line he probably says to everyone he sees. You were seen by one of the best in the country. Enjoy your beautiful new baby!
 

Molly1940

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Thank you so much for the feedback. I am just trying to make sure I am an advocate for myself when I need to be and it appears it's time just to live with this and move on. Thanks for your kind words
 

hunterross258

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I got that in January too. No als at this time. Too neurologists are good but unfortunately they aren't psychic :)
 

Molly1940

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Did you question that further? I should have asked him what he meant by that...
 

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Molly, I have a similar experience to yours except I've had fasciculations and cramps for about six months longer, since May 2014. In early August 2014 I received a similar diagnosis: CFS or Isaac's Syndrome and no ALS now. As Nikki mentioned, nobody is immune to ALS so I think many neurologists tell you this to be safe.

As to the conflicting information you found, I think that it is because (at least according to my neurologist) CFS is not very well understood (nobody knows the cause) and ALS is all about progression and the company it keeps. I asked him if CFS/Isaac's is a precursor to ALS and he told me it isn't. He said that CFS/Isaac's symptoms mimic what could be some early ALS symptoms in extremely rare cases. This is why, he said, neurologists play it safe and give patients EMGs and other tests. But these diseases don't progress like ALS and don't turn into ALS.

According my neurologist the more time that goes by without progression the better, especially with no other symptoms (clinical weakness, atrophy, etc.). For example, I'm 9 months into my symptoms and 6 months from my CFS/Isaac's diagnosis. My symptoms have been largely the same and EMGs in July 2014 and February 2015 came back with the same results: no ALS.

I know firsthand that CFS is not fun. But given that you've had your symptoms for over three months now, your EMG was clear, you have no clinical weakness, and your neurologist at one of the best ALS clinics said no ALS, personally I would take all of those as great signs to stop being worried and continue to enjoy your life!
 

Molly1940

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Acronyc-
Thanks so much for taking the time to reply to my post. It's a difficult space to be in when these scary symptoms occur and doctors just kinda of shrug their shoulders. The doctor I saw at Hopkins is regarded as one of the best but he didn't really explain anything to me in depth..and it's partly my fault for not pushing further. Anyhow thanks for clarifying about CFS- I should also add my immunoglobulin m serum results were elevated (339) but haven't heard back form the doc yet- just saw this on labcorp. Do you take any medicine that helps with the twitching and cramps? Klonopin seems to be helping a bit. It's hard not to worry about this whole thing
 

Acronyc

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Molly, believe me I know how this diagnostic process is. When I first went to the doctor after two months of symptoms, they all brushed me off because of the amount of exercise I was doing (I was an ultra marathon/trail runner). My current neurologist, the one who finally took me seriously, mentioned at the very beginning that ALS is a possibility, though remote.

You might want to discuss with your doctor about Isaac's, it's basically a more severe form of CFS. About 40-50% of people with Isaac's have VGKC antibodies and there is a test you can do for this, which I'd recommend getting done. I was negative for this, but EMG was positive for Isaac's, hence my diagnosis.

As for medicine, I've tried a lot and nothing will completely take away my cramps and fasciculations. I'm on 800mg of Tegretol (carbamazepine) and 6mg of Ternelin every day. I've been on Tegretol since August 2014 and just started Ternelin about six weeks ago. I'm not sure if they are actually helping or what it would be like if I went off them, but I definitely still have fasciculations and cramps every day, all day.

One thing I've noticed is that lack of sleep, too much walking/moving, caffeine, and stress all make it worse. Please PM me and I'd be happy to discuss more CFS/Isaac's related stuff anytime. There's also a Facebook group for this that has helped.

Lastly, I know it's not hard to worry about this. I was told ALS was a possible diagnosis early on, and it was very hard to forget about it. But, whatever it is, I think the best thing to do is focus on today and try not to worry and enjoy your life as much as possible!
 

Molly1940

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Cramp Fasciculation Syndrome- Anyone had it for an extended period of time?

Hi everyone. I've recently been diagnosed by a Hopkins ALS specialist with Cramp Fasciculation Syndrome. I've read that in a couple of instances CFS has developed into ALS although the doctor said it is not a precursor to ALS. Has anyone had experience with CFS?
My muscles constantly twitch, are tight, and cramp. Any insight would be greatly appreciated!
 

GregK

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Re: Cramp Fasciculation Syndrome- Anyone had it for an extended period of time?

I'm pretty sure there's a CFS forum out there.
Better to ask there.

> Has anyone had experience with CFS?

You and Acronyc seem to have already had this conversation ... Did you want to start over?
 

Acronyc

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Molly, I believe GregK is right, if you have a diagnosis of CFS there are CFS forums out there that would better suit your concerns. There's a good Facebook community about CFS/Isaac's/PNH out there (search for ISAACS.PNH on Facebook).

As I believe I mentioned before, from what I've been told by my neurologists CFS doesn't turn into ALS. CFS mimics certain early ALS symptoms. If a person who originally was diagnosed with CFS ends up having ALS, they always had ALS and not CFS.

I think I mentioned that I've had CFS/Isaac's for almost 10 months now. Fasciculations, cramps, and pain every day but no pathological atrophy and no clinical weakness. Many people have had CFS for years and even decades. You will find a lot of them on the CFS/Isaac's/PNH forums and groups out there and I think that would be a better place to continue these conversations.
 

Molly1940

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Thank you Acronyc for offering some specific and helpful information. I will check out those forums.
 
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