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Nikki J
Moderator
- Joined
- Mar 22, 2012
- Messages
- 16,475
- Reason
- PALS
- Diagnosis
- 04/2014
- Country
- US
- State
- MA
- City
- Boston
You don’t. Closed is closed. If you have new information from your doctors you are allowed to start a new thread if your previous one is closed. For reference https://www.alsforums.com/forum/do-i-have-als-als/40722-am-i-heade-toward-als-diagnosis.html
It has been a few months since I last posted. My oringinal post was titled "Am I heade towards an ALS Diagnosis".
I have had 3 EMG/NVC tests in the last 9 months and all were by different people(2 of the Nuero's specialize in MND a at the University of Cincinnati). All 3 studies were abnormal but all also argued against MND in spite of the mention of obvious muscel atrophy.
I am so thankfull for the findings to this point but I still continue to experience moderate spasticity and weakness in lower limbs and weakness in upper limbs as well. Have also been experincing occasional slued speech, spasticity on left side of face with biting of lower lip when speaking.
Has anyone else gone through multiple "no ALS" exams and suddenly there it is?
With symptoms still persisting I'm not sure what to think.
Thank you all in advance for any insight as to other ancles I may be missing.
By the way, Rhuemetologist ran all her tests agian and found nothing nor did the Hemtologist during my recent anual lab draws.
I have had 3 EMG/NVC tests in the last 9 months and all were by different people(2 of the Nuero's specialize in MND a at the University of Cincinnati). All 3 studies were abnormal but all also argued against MND in spite of the mention of obvious muscel atrophy.
I am so thankfull for the findings to this point but I still continue to experience moderate spasticity and weakness in lower limbs and weakness in upper limbs as well. Have also been experincing occasional slued speech, spasticity on left side of face with biting of lower lip when speaking.
Has anyone else gone through multiple "no ALS" exams and suddenly there it is?
With symptoms still persisting I'm not sure what to think.
Thank you all in advance for any insight as to other ancles I may be missing.
By the way, Rhuemetologist ran all her tests agian and found nothing nor did the Hemtologist during my recent anual lab draws.
I have a condition called MGUS which stands for monoclonal gamopathy of undertmined significance. My white bloods cell count and plateletts tend to be low. I was bein seen every 3 months for the first year or so but now onl yearly. MGU can often times be a harbiner of mutiple myloma (as well as other blood diorders).
My most recent visit was about 2 weeks ago and the DR. aid that if things continue on the current path i'll live to be 110 if this were my only health issue.
I'm not scheduled to see my Nuerologit again until August.
Thank you so much for responding and if any other thoughts or advice come to mind please share.
My most recent visit was about 2 weeks ago and the DR. aid that if things continue on the current path i'll live to be 110 if this were my only health issue.
I'm not scheduled to see my Nuerologit again until August.
Thank you so much for responding and if any other thoughts or advice come to mind please share.
Atsugi
Moderator emeritus
- Joined
- Jan 11, 2011
- Messages
- 5,921
- Reason
- Lost a loved one
- Diagnosis
- 12/2010
- Country
- US
- State
- FL
- City
- Orlando
Hey TSAK,
We're all pretty convinced that you don't have any chance of having or getting ALS, now or in the future. Your doctors seems to be saying that, too.
I don't know what you've got, but frankly, it's not our business. For a lot of well-thought-out and time-tested reasons, we won't discuss any other possible problems except ALS. Which you don't have.
So it's time, again, for you to go somewhere where they might be able to help you. Follow your doctor's advice. That is, your GP medical doctor. She sees what all the specialists have to say, then knows which direction to take you.
We only have time, energy, bandwidth, and knowledge for people with ALS. Not you. I recommend that you're wasting you time here, when you could be elsewhere, constructively using your time to get better. Again, ask your GP. Good luck.
We're all pretty convinced that you don't have any chance of having or getting ALS, now or in the future. Your doctors seems to be saying that, too.
I don't know what you've got, but frankly, it's not our business. For a lot of well-thought-out and time-tested reasons, we won't discuss any other possible problems except ALS. Which you don't have.
So it's time, again, for you to go somewhere where they might be able to help you. Follow your doctor's advice. That is, your GP medical doctor. She sees what all the specialists have to say, then knows which direction to take you.
We only have time, energy, bandwidth, and knowledge for people with ALS. Not you. I recommend that you're wasting you time here, when you could be elsewhere, constructively using your time to get better. Again, ask your GP. Good luck.
Thank you for your input!
For the record, my GP has told me he doesn't know where else to go and said God bless you.
I will respect your request and move on unless I receive an ALS diagnosis.
Blessing to all who have taken the time to share opinions and knowledge!
For the record, my GP has told me he doesn't know where else to go and said God bless you.
I will respect your request and move on unless I receive an ALS diagnosis.
Blessing to all who have taken the time to share opinions and knowledge!
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