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plznotals

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Hello All and thank you for taking the time to read my post. In the past few months I have gained so much respect for those living with not just ALS but any illness. It takes courage to deal with all that comes along with life on a daily basis. I pray for all of the diagnosed and the caretakers alike.

I am here because I, like many others are very concerned about my health and I will try to explain as clearly as possible without being too long winded. Ok, last December 30th, I noticed a strange, sudden weird headache, slight dizziness and then tingling in my hands and feet. I thought I was developing diabetes since my gp told me my sugar levels were a bit high. My toes tingled over the weekend and then I noticed my lower legs burning at night. Over the next few days I developed a creepy, crawly sensations in my arms, face, scalp and other places.
It was the nastiest feeling ive ever experienced. I noticed twitching EVERYWHERE, arms, legs, buttox, tongue, lips...even groin, rectum, you name it. I felt tenderness in my glands and everything. Then, the following week, while at work, I suddenly felt my left arm and leg get weaker! It stopped me in my tracks. I didnt fall or lose consciousness but it scared me to death!

I went to see my gp and explained all of my symptoms...which also included noticeable weight loss....Weighed 170 in September-October, but only weighed like 150 at the time. He said it did not sound like diabetes. He told me to go to the neuro and gastro docs. By the way, when he examined me, he said my glands were not swollen. All bloodwork was normal except for an ANA for Lupus. My gp said he didnt think it was anything but told me to also see the rheumatologist. I went to see the neuro who gave me a clinical exam, then an emg, ncv, transcranial doppler...all were negative. Gastro doc did endoscopy and colonoscopy and told me that all he saw was mild inflammation. He gave me prilosec and told me to come back. While all of this was going on, I would notice that in the mornings, my hands would shake a lot, I had no appetite and had to begin drinking Boost to make sure I got some calories.

Then, i noticed pain in my left calf, twitching increased....tingling continued and still no answers.. Went for mri's of brain, cervical, thoracic and lower lumbar....neuro said were normal. A few weeks ago, I started noticing that the weakness was moving to my right side. I can still lift things and have not become immobile, but the "weak" feeling is scary, annoying and very disturbing. There have been days when I walk down steps and it feels like my left leg will give out...never has. My left arm and leg still feel the same as it did several months ago, and the left bicep also feels weird in the belly of it. My feet and legs hurt at times...I feel sporadic pains throughout my body. There are times when I feel as if I may lose bowel control. It is not very bad these days, but several months ago it was horrible. I am on cymbalta...given to me by the first neuro I saw. I also take bystolic for hpb and was taking lipitor for cholestorol. Neuro told me to stop for a while.

I talked to my neuro again in May who did another emg/ncv and ordered more mri's which he said were normal. He told me to see a "neuromuscular" specialist in his office for his opinion. I went to see him and he ordered more bloods, did another emg/ncv and more mri's...and told me that all the tests looked good...including my clinical exam. He told me that the bloods came back normal...still sees the lupus antibody but didnt think anything of it. He said perhaps I picked up a virus that is inside the muscles causing me all of my symptoms.

SO..I know it may be annoying when people like me do all this explaining, but I am becoming a real mess over this. HERE IS A BIG REASON WHY....since the very beginning of all these symptoms, my girlfriend also began twitching, which she still has....HER MRI revealed some white spots....they told her that she has Hashimotos disease, which she never had before...and now she is telling me that her hands are tingling. It seems like every symptom I have or have had, she is having also. She has not mentioned any rectum discomfort, but has been complaining about the twitching, tingling hands and now pain in her feet. I am 42, she is 30. Before December last year, we were both healthy and active. Sorry for being longer than I wanted to be..but...does any of this sound like ALS? Could me and my girlfriend possibly develop ALS from a viral infection? Any opinions on this would be GREATLY APPRECIATED. THANK YOU SO MUCH.

CJ
 

sadiemae

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I read your whole post, waiting for the ending saying. Haha just kidding. Go to. About. B f s.. com. Ask them. If u bothered to read anything on this forum before you posted. Well you wouldn't have posted. No no and no to all your questions
 

Al

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Doesn't sound like ALS to me. It is not caused by a virus. No one knows what causes it. The odds of you both having ALS are astronomical.

AL.
 

plznotals

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Hello and thank you. Im sorry I was so long winded....there is actually more that I wanted to mention..LOL...I will go to the site you recommended though.

But before I do....the weakness comes and goes....the jerking is most noticeable when I am sitting or laying still....swallowing has not been a problem yet, but it does feel like a lump in my throat at times...and now lately, it feels like my wrists and ankles are "looser" and the spasm or jerk. Thank you again.
 

sadiemae

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With ALS once you have weakness it never gets better. It does not come and go because the muscles are dead. This is a fact and it is discussed and explained very well on the site I mentioned.
 

Toto's Dorothy

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Plz,

The answer is definitely no to ALS. And Sadie has pointed you to the correct web site. Since the weight loss did your sugar levels ever go down? And you never mentioned seeing the rheumatologist. Have you not gone? I would be seeing one before a neurologist. JMO

Now for your girlfriend, I would like to know if she is being treated for the Hashimotos disease? Its not something to take lightly! Has anyone ever explained the white spots on her MRI? It seems she should be seeing the neurologist. Again, JMO. Are the white spots typical of MS? Also, I believe there's a can cer that connects white matter and thy roid issues. She really needs to be evaluated.

Good luck to you both,
 

Toto's Dorothy

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Plz,

I posted but it went to Mod Land. It will be posted later. A shortened version: Your girlfriend should be seen asap. You didn't mention her being trea ted for Ha shi mo tos. She really should be eval uated. White spots and thy roid may be a certain form of can cer. Not meaning to scare you, just showing concern.

Good luck and let us know,
 

Toto's Dorothy

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I'm sorry Al and David. Me thinks it was the H word and/or the D word. I just forgot.

And to any others, they were not curse words! But those would fit.
 

plznotals

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Good Morning all, and thanks for your responses. I wanted to say that about my girlfriend, she has seen her doctor who has not prescriber her anything for the thyroid at this point....and she has also seen the neuro doc, a different one than mine. The place is in manhattan....she is following up also on her "issues". I try not to scare her with the ALS or anything related. But from the very onset of our symptoms, I have wondered if a virus could have been the culprit. We have both been tested for HIV....and I for all STD's. The only one that showed up in me was HSV-1. My docs say that countless people have this and it is unlikely the cause of our symptoms. And just to let you know, as I type this my hands are shaking and my stomach is queasy. Ok, thanks again, I am praying for us all.
 

Toto's Dorothy

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Plz,

Did you read the sticky up top above your thread? Try reading the one on medical anxiety by Alyoop. It sure sounds like anxiety to me.

Has your girlfriends doctor tor given a reason for withholding treat ment from her? I just don't understand. Its not anything to play around with.
 

Toto's Dorothy

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Hmm, went to mod land and the last one never showed up. Sorry again, Al and David.

Plz,

You need to read the thread above by Alyoop. And ask ques tions at the B F S place.

As for your girlfriend, I don't quite understand her doc tors ne glect of tre at ment. Its not something to ignore. She may need to see someone else for a second o pin ion.

And don't take offense, but were you making "light" of your girlfriends symp toms? Maybe I read it wrong. So I will apologize in advance.

Good luck,
 

plznotals

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Hi all....thanks for the responses. I TRULY do not believe my symptoms are anxiety. While I am certainly concerned about them, I am noticing more disturbing symptoms almost daily. If I hadnt mentioned this before, over the last week, it feels like my wrists and ankles are weaker. Today, while driving, I had pain in my left wrist which never happened before. It seems like along with the weakness in my wrists, the forearms, upper arms and even shoulders feel weaker. I feel weakness in my upper back. My lower legs and feet feel weaker, so I am concerned about wrist/foot drop.

**I know people say that ALS weakness does not come and go....but one question I have is....does it Just happen....or do ALS patients notice progressive weakness over time until they can no longer use the affected part of the body? Because that is certainly what I feel is happening...but its in so many areas so I do not understand what is happening.

**Also, has anyone ever experienced nausea or a weird smell emitting from your breath or stomach? Over the past few months I had noticed this strange smell. When i began taking the prilosec, it seemed to go away...Now, I am noticing the same smell coming from my girlfriend, but she does not seem to notice it. I do immediately when I am around her. And, we are hungry far more often than we used to be. For instance, we can eat a Subway sandwich meal...and feel hungry within an hour. That is very odd for the both of us.

Finally, I take her symptoms very seriously. She is due to see her neurologist again to be re-tested. Strangely, when she got her first test, the neuro told her to come back in 2 years! WHAT? So, I told her to either find another neuro or discuss that with her pcp. She did and was told to go back to be retested. The thyroid issues according to her doctor does not require medication at this time., just monitoring. All of her bloods have come back normal.

IN SUMMARY:
1. MY GF is following up.
2. I am getting the skin/nerve biopsy results in a week.
3. I see the gastro doc tomorrow for a followup.
4. My "weakness" which is on both sides is concerning me.
5. Oh and we are both constantly clearing our throats.
6. She is tired all of the time.
7. I am concerned about foot/wrist drop.
8. I do not think this is anxiety.

Thank you all.
 

ghost_writer

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Dear Plznotals,

I agree with the others, your complaints don't sound like ALS to me.

If I understand correctly, you are both having the same issues. I would logically look at common living space, black mold, insecticides, etc. rather than ALS. I feel you should follow up with your medical care and take ALS off your radar, PERIOD!

Hope you find your answers. Roger
 

Alyoop

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I agree, it could be your surroundings. Your symptoms are way to generalized to be ALS, as you have bgwm told.
Can you get your Water / house tested? Definitely sounds either environmental or anxiety.
 

Toto's Dorothy

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Plz,

The health department can test your water usually for free. Do you have natural gas in your home? You mentioned both of you being tired. As for the hunger, do you or have you both eaten sushi or possibly an undercooked fish? You could have a parasite. Sometimes you need to separate the symp toms. You mentioned the ANA being off, but you never answered my question about seeing the rheum a tolo gist. Also, for the sugar scare, an end o crinol ogist should be on your to do list. And your girlfriend should see one also.

Good luck,
 
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