Notices

Closed Thread
 
Thread Tools Search this Thread
Old 11-10-2015, 05:03 PM #1
Maya77 Maya77 is offline
New Member (Say Hi)
 
Join Date: 2015
City: Cleveland
State: Ohio
Country: US
Interest: Other
Posts: 7
Maya77 is on a distinguished road
Maya77 Maya77 is offline
New Member (Say Hi)
Join Date: 2015
City: Cleveland
State: Ohio
Country: US
Interest: Other
Posts: 7
Maya77 is on a distinguished road
Unhappy So confused! Second opinion in 2 weeks

Hi everyone! I'm new here and scared. Below is a list of dr diagnoses I've gotten--yet no one firm diagnosis yet. Any insight?

1. Weight loss 11/1/14 162 lbs, 11/10/15 120 lbs--without trying.
2. No reaction to babinski test
3. Abnormal Rhomberg
4. Few beat ankle clonus bilaterally
5. Bilateral Hoffman's sign and crossed adductors, worse on right
6. DTR's 3+/4 throughout with flexor plantar responses bilaterally
7. Positive Rhomberg
8. Hyperreflexia and hemisensory loss with FH of MS
9. Tachycardia
10. Parethesias
11. Low creatinine (since 2013)
12. On and off low hematocrit, on and off anemia
13. Lyme Abs IgG/IgM 0.20
14. EMG: small fiber neuropathy cannot be ruled out. Very mild chronic neurogenic change is detected in one foreleg muscle. Isolated mild chronic motor axon loss in left abductor hallucis muscle.
15. MRI of cervical and thoracic spine: slight reversal of normal cervical lordosis with mild dextrocurvature of the cervical spine. Mild levoscoliosis of the upper thoracic spine.
16. MRI of brain: normal parenchymal volume loss.
17. Co2 has been low periodically
18. Urinalysis (multiple) show hemoglobin/blood in urine, red blood cells, and squamous epithelial cells
19. Cholesterol was high one year ago--now totally normal
20. High prolactin
21. Hx of trigeminal neuralgia
22. Hx of dysphagia dating back to 10/09--worse now.'
23. T-wave abnormalities in many EKG's
The above are all doctor diagnosed. My symptoms are so many I can't even list them all, but most notably severe twitching in legs arms abdomen back, muscle (arms and leg) weakness and shakiness, freezing cold all the time, and hands feet and lower legs feel cold to touch all the time. I have fallen 3 times--just standing and lost balance and fell to ground. I'm off balance a lot! Hard to stand for long periods of time. Heart rate is always above 100 when standing even on beta blockers. And much more. Swallowing issues like swallowing while talking etc. drooling (very recent), and drinks spilling out of my mouth while drinking (recent).

I see a second neuromuscular specialist in 2 weeks. What are the chances this is ALS? I'm a 38 1/2 year old female. And a single mom. And scared to death!
Maya77 is offline  
Old 11-10-2015, 05:17 PM #2
Maya77 Maya77 is offline
New Member (Say Hi)
 
Join Date: 2015
City: Cleveland
State: Ohio
Country: US
Interest: Other
Posts: 7
Maya77 is on a distinguished road
Maya77 Maya77 is offline
New Member (Say Hi)
Join Date: 2015
City: Cleveland
State: Ohio
Country: US
Interest: Other
Posts: 7
Maya77 is on a distinguished road
Default Re: So confused! Second opinion in 2 weeks

By the way this was all from Cleveland clinic dr and one that I just saw mentioned in another thread! I hate the clinic! Going to UH for second opinion!
Maya77 is offline  
Old 11-10-2015, 05:26 PM #3
Atsugi's Avatar
♥ Atsugi Atsugi is offline
Extremely Helpful Member
Forum Moderator
 
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 5,167
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
♥ Atsugi Atsugi is offline
Extremely Helpful Member
Forum Moderator

Atsugi's Avatar
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 5,167
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
Default Re: So confused! Second opinion in 2 weeks

Lot's of trees. Poor view of the forest. I don't see ALS in there.
Twitching is common to many conditions. Even healthy people twitch. It is not diagnostic.
ALS has nothing to do with your heart or your freezing.

The big question concerning ALS is: Do you have a muscle that is limp, useless, and doesn't contract? This muscle won't "feel" weak, exhausted, burning or anything at all--it simply won't go. Typically, it's dropfoot caused by a paralyzed muscle.

The EMG is your friend. ALS will show up on an EMG. Apparently, it didn't, or your neurologist would have told you.

Keep your appointment. But what if your problem is not neurological? You should see your family GP. GP's are trained to investigate health problems and call in the appropriate specialist when needed.

In the meantime, I don't see why you're worried about ALS.
Atsugi is offline  
Old 11-10-2015, 05:41 PM #4
Maya77 Maya77 is offline
New Member (Say Hi)
 
Join Date: 2015
City: Cleveland
State: Ohio
Country: US
Interest: Other
Posts: 7
Maya77 is on a distinguished road
Maya77 Maya77 is offline
New Member (Say Hi)
Join Date: 2015
City: Cleveland
State: Ohio
Country: US
Interest: Other
Posts: 7
Maya77 is on a distinguished road
Default Re: So confused! Second opinion in 2 weeks

The neuro mentioned MS, other neuromuscular disorders, ALS, and I said it could be late stage Lyme but no one wants anything to do with that for some reason. I have a spinal tap set up and dr says she won't diagnose me til that is done. I drop things a lot, it's very hard to write, and I fall. I don't know but the fact ALS was brought up and I'm having another EMG (more involved--this one was just one side of my body and only arm/leg muscles)--not so in depth? I pray you are right! Thank you and God bless you all who suffer from this disease! My 6 year old raised money for ALS last year as our friend has it.
Maya77 is offline  
Old 11-10-2015, 06:19 PM #5
Atsugi's Avatar
♥ Atsugi Atsugi is offline
Extremely Helpful Member
Forum Moderator
 
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 5,167
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
♥ Atsugi Atsugi is offline
Extremely Helpful Member
Forum Moderator

Atsugi's Avatar
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 5,167
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
Default Re: So confused! Second opinion in 2 weeks

For a doctor to tell you all those scary things seems kind of irresponsible to me.
Atsugi is offline  
Old 11-10-2015, 07:01 PM #6
Maya77 Maya77 is offline
New Member (Say Hi)
 
Join Date: 2015
City: Cleveland
State: Ohio
Country: US
Interest: Other
Posts: 7
Maya77 is on a distinguished road
Maya77 Maya77 is offline
New Member (Say Hi)
Join Date: 2015
City: Cleveland
State: Ohio
Country: US
Interest: Other
Posts: 7
Maya77 is on a distinguished road
Default Re: So confused! Second opinion in 2 weeks

That's why I'm seeking a second opinion as the Cleveland clinic isn't all it's cracked up to be. I also have tongue fascillations while my tongue is relaxed inside my mouth. Is this symptom only an ALS symptom? Sorry for all the questions!
Maya77 is offline  
Old 11-10-2015, 07:15 PM #7
Nikki J's Avatar
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 7,070
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 7,070
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: So confused! Second opinion in 2 weeks

No tongue twitches can be, and are usually benign- just like other twitching. It is not specific to ALS
Nikki J is offline  
Old 11-11-2015, 02:14 AM #8
lgelb's Avatar
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 7,086
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 7,086
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: So confused! Second opinion in 2 weeks

I would see an internist to try to address the low-hanging fruit, like tachycardia and any systemic infection/disorder. A lot of these features look secondary to stress, anxiety and/or inadequately-treated tachycardia. Some look incidental and probably not important. Things like blood in urine call for specific tests that I don't know if you've had or not. But I would find an IM who treats the medically complex, walk through this problem list, prioritize and develop a diagnostic plan. S/he could also get some hx relative to possible Lyme exposure and determine if an abx course is warranted.
lgelb is offline  
Old 11-11-2015, 07:43 AM #9
Maya77 Maya77 is offline
New Member (Say Hi)
 
Join Date: 2015
City: Cleveland
State: Ohio
Country: US
Interest: Other
Posts: 7
Maya77 is on a distinguished road
Maya77 Maya77 is offline
New Member (Say Hi)
Join Date: 2015
City: Cleveland
State: Ohio
Country: US
Interest: Other
Posts: 7
Maya77 is on a distinguished road
Default Re: So confused! Second opinion in 2 weeks

Unfortunately I've seen every specialist and had every blood test to rule out other disorders. That is why I'm so scared!
Maya77 is offline  
Old 11-11-2015, 08:21 AM #10
Maya77 Maya77 is offline
New Member (Say Hi)
 
Join Date: 2015
City: Cleveland
State: Ohio
Country: US
Interest: Other
Posts: 7
Maya77 is on a distinguished road
Maya77 Maya77 is offline
New Member (Say Hi)
Join Date: 2015
City: Cleveland
State: Ohio
Country: US
Interest: Other
Posts: 7
Maya77 is on a distinguished road
Default Re: So confused! Second opinion in 2 weeks

They have ruled out Lyme (by one Elisa test--but I wanted more in depth testing because I grew up in the woods and riding horses). They have also ruled out all autoimmune issues. My cardio doc says it's not stemming from my heart, it's something that's causing my heart to beat so fast. Seen urologist, had bladder scoped, seen gi had endoscope and colonoscopy, seen endocrinology he ruled out his stuff, saw my primary care doc and she said this is last step. I'm sure I missed some other specialists I've seen too. They've taken more blood from me the past year than I've had taken in my entire life. So stressful!
Maya77 is offline  
Old 11-11-2015, 09:16 AM #11
Atsugi's Avatar
♥ Atsugi Atsugi is offline
Extremely Helpful Member
Forum Moderator
 
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 5,167
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
♥ Atsugi Atsugi is offline
Extremely Helpful Member
Forum Moderator

Atsugi's Avatar
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 5,167
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
Default Re: So confused! Second opinion in 2 weeks

ALS doesn't make the heart go fast.
Atsugi is offline  
Old 11-11-2015, 11:22 AM #12
Maya77 Maya77 is offline
New Member (Say Hi)
 
Join Date: 2015
City: Cleveland
State: Ohio
Country: US
Interest: Other
Posts: 7
Maya77 is on a distinguished road
Maya77 Maya77 is offline
New Member (Say Hi)
Join Date: 2015
City: Cleveland
State: Ohio
Country: US
Interest: Other
Posts: 7
Maya77 is on a distinguished road
Default Re: So confused! Second opinion in 2 weeks

I know--the heart beating fast is the least of my worries actually. The constant whole body twitching and vibrating, the loss of strength and weight loss, the balance issues, falls and constantly dropping things are my main concerns 😣
Maya77 is offline  
Old 11-11-2015, 02:17 PM #13
affected's Avatar
affected affected is offline
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 11,461
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 11,461
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: So confused! Second opinion in 2 weeks

So sorry for what is going on with you.

We really can't see ALS in that huge list.

I'm afraid this is a very specific forum for giving support to people with ALS so we can't really untangle this.

I do wish you all the best.
affected is offline  
Closed Thread

Tags
abdomen, als, als?, ankle, back, balance, brain, clonus, confused, death, diagnosis, emg, fell, female, heart, hyperreflexia, lyme, mri, muscle, new here, scared, second opinion, swallowing, swallowing issues, symptoms, twitching, weakness, weight loss


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Symptoms for weeks garyh341 Do I Have ALS? Is This ALS? 7 12-16-2015 05:28 PM
see everyone in 2 weeks swalker General Discussion About ALS/MND 4 05-09-2015 04:22 PM
Diagnosed 2 weeks ago. What now? slopokahontas Newly Diagnosed 35 11-05-2014 12:09 PM
two weeks since ivig veggiepete General Discussion About MMN 4 08-29-2014 09:21 PM
5 weeks.? hexag0n_sun General Discussion About ALS/MND 5 08-30-2013 10:29 AM
Could I have ALS - 9 weeks pregnant Zaranataly Do I Have ALS? Is This ALS? 12 02-29-2012 11:20 AM
2 weeks ... 4myMom1-7-11 Current Caregivers (CALS) 6 01-22-2011 04:51 PM
Diagnosed with ALS 3 weeks ago cpmk59 Stories of Hope 9 09-25-2010 08:28 PM
my husband was just diagnosed 2 weeks ago. sadiemae General Discussion About ALS/MND 17 10-04-2009 12:31 AM
Having a Really Bad Going on Two Weeks wewillbeatthis General Discussion About ALS/MND 14 08-14-2008 08:36 AM


All times are GMT -5. The time now is 08:50 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016