It's been a while....still worried!!!!

[keegansmommy4]

Hello Everyone,

I have written on this site a couple of times in the past, and have gotten some very good advice from you all and I am back again asking for the same assistance! :) I have been dealing with the fear of having ALS and a ton of symtoms for the last 6 months and it seems as though things are getting worse! The doctors still can't tell me what is wrong. I was a perfectly healthy 26 year old 6 months ago until i got the swine flu and it seems as though somethng just changed in my body. I have been to neuro after neuro who looks at me and says no way, but all the sxs that I have point to it. The biggest thing is the bulbar symptoms. I have been having some slight trouble with swallowing, but when I did a swallow test it was normal. Anyway, I also feel like I said before that my tongue has totally changed shape, size and bulk(actually I know it has changed). The other thing is that it literally looks like the back of my throat is further back then before kind of like there is a whole in the back of my mouth where my tonsils are becuz the back of my throat is so far back. Has anyone with bulbar onset had atrophy that did that? I also have weakness but it is in my arms and legs and seems to be equal all over. I am extremely fatigued all the time and often in alot of pain if I do normal house work and other things that I used to do with no problem. Again I am 26 years old so none of that should be a problem. I have been thru so much with this. I went ahead and had brain surgery becuz I had a condition that my neurosurgeon thought could be the cause of the problems and it ended up not working and I also got on antidepressents to make sure that none of this stuff was in my head lol. I had an uncle who was like a father to me die last year of this horrible disease and I am so afraid that its the familial kind and I have it. I have a appointment with the mda clinic here in san diego with the specialist that is supposed to be the best in town so I hope that when I see him he can figure this out. For now though I would love to hear anyones advice or comments because I feel like I am heading back into that hole of depression even though I am on meds because I look atm y beautiful son everyday and fear for him. Thank you ahead of time to anyone who takes the time to read and reply I GREATLY appreciate it.
Emma

[BethU]

Emma, you clearly have something going on, but your symptoms do NOT sound like ALS. Visual changes in the tongue or throat are not a sign of ALS. True bulbar symptoms in your tongue would produce speech problems and/or swallowing problems that would show up in a swallow study long before you could see any change in configuration. It is a change in the performance of muscles ... not how they look ... that signals ALS.

I have had a lot of changes in my bite, jaw alignment, tongue, lips and cheeks, but cannot say about my throat, because I have never examined it. It's really taken a long time for atrophy to show up in my mouth and face ... a couple years after symptoms started. If you had ALS atrophy in your mouth and throat, you would surely have noticeable speech and swallowing issues.

I'm glad you're going to the MDA clinic. They should have some answers. Just a wild guess, with nothing to back it up, but it sounds like it could be lingering complications of the nasty H1N1 flu.

I hope you get it figured out and treated quickly! Let us know what happens.

[halfin]

Emma, I recently watched the movie "I Remember Me" on Netflix. It is about Chronic Fatigue Syndrome. That disease had a poor reputation at one time but now is generally accepted as valid and real. The symptoms sound similar to some of what you describe. Many sufferers say that it started with a seemingly normal virus infection but they developed this terrible weakness afterwards.

Unfortunately they don't even understand CFS as well as ALS really, but at least CFS is not generally fatal. (One young guy in the movie was so debilitated by CFS that his condition was about as bad as many PALS though.)

[laurel]

You mention your symptoms began after having had Swine Flu. The most common condition that causes neuromuscular symptoms following flu or a major infection is Guillain-Barre Syndrome. Have you discussed GBS with your neurologist?
Laurel

[Zaphoon]

I'd just like to say that I don't have any visual changes in my tongue. It is still blind.

Zaphoon

[BarryG]

Zaph, you would be a perfect candidate for a "blind taste test" :wink:

[keegansmommy4]

thank yyou all so much for replying! I really hope that you are right it is just that I am experiencing so much that it is hard to stay positive some times. I thank you all so much for finding the time to even answer my questions. I have thought about it being something due to the swine flu because it literally started right afterwards, but so far the docs have tested me for GB and so many other mimickers and everything has come back normal. I did have a positive ana but all the auto- immune tests that they run on me have been normal. The only other thing is that my vitamin D levels have been really low for the past 6 months everytime that they test me. I know that can cause twitching and weakness but does anyone know if it could cause all of my sxs? I have been getting twitching in my side and my stomach which i don't remember ever having before, are those spts normal for benign twitching or do you know if it would point to something more sinister? Thank you again for your advice and time. Have a wonderful day :)
Emma

[rhythman]

Emma

You have come to the right place. I've only been posting since last week, but read posts for 3 weeks before that and I can tell you that there are many knowledgeable, caring people on these boards.

You are getting great feedback from several people more informed than I, but I do want to comment on the tongue thing. My tongue is doing the exact same thing. It is flatter, thinnner, and less bulky (for sure), but as 'BethU' noted, this does not seem to ever be noted as a presenting als symptom. Nine years ago, this happened to me (to a lesser extent), while I was having left side clumsiness, vision problems and calf twitching. I also noticed my tongue would no longer come out straight...pulled significantly to the left. (That never went back to normal.) The neuro thought this was unusual, but all tests, mri's, etc. came back normal. After a few months all returned to normal, but upon follow up, the neuro had no explanation for the tongue appearance changes, especially since I could still speak almost normally...had a slight slur which went away.

I am on this forum, because that has come back along with rapidly progressing bulbar symptoms and problems with all 4 limbs! I keep trying to tell myself it's another episode of whatever I had before, but much more intense, widespread and rapid in onset. Here's hoping.

Anyway, I just wanted to let you know that there is someone else who had that before and saw it clear up. I'm glad you posted because I've not been able to find anything online about clearly visable tongue changes as an als presenting symptom. The best info I've found is from people on these boards.

Take care

[keegansmommy4]

thanks for the info! I know for sure that my tongue has changed too! I always had quite a big beefy tongue and I even had my tongue pierced, so I know that it is different. The thing that scares me is that I can't find anything else that makes the tongue change besides als. I too like you keep trying to tell myself that this is something else and that I will find out what it is and be able to move on with my life, but it is hard when you wake up everyday and feel like you have been hit by a bus and you can't move your limbs like you used to and you have bulbar issues. I am just so appreciative of everyone here that tis willing to take time out of their day to ans my questions even if they do sound crazy :)
Emma

[rhythman]

I understand your worry. Every time I brush my teeth, I am reminded that my tongue looks different and I gag as soon as I put a tooth brush near it. I try to reassure myself that perhaps the cause is something else. All I can do for myself, and to try to ease your mind a bit too, is to remember that this happened to me once before and to also reread what BethU said. :-)