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9671341 tn?1443128711

Update on me finally

I haven't been on here in probably 8 months. I am still in limbo land :( I still continue to have same symptoms.  I am going through pt, ot and cognitive therapy.  

I decided it was time to update because I have a new worry some symptom.  I do not know if this an ms symptom or something else. I'm basically down to ms, lupus, or als. Everything else has been negative.

Anyway the new symptom is fatigue like feeling in my neck when I am chewing or talking alot. Soft foods are ok but anything with meat or alot of chewing not good :( has anyone experienced this? Thanks now time for me to go read and see how everyone else is doing!
Best Answer
5112396 tn?1378017983
I'm impressed! Pursuing OT, PT, and CBT (alphabet soup!) are all extremely positive things to do for yourself.

I've not experienced anything like your describing, but it could be many things, including dental issues or nothing. It would be difficult for a medical professional person to say unless it's known to be characteristic of a specific condition.

I reread your past post history. Having spent two years tangling with the medical system must be exhausting. I hope CBT has helped you find coping skills for the stress that can bring. I've found it very helpful myself.

I'm interested to see you say that "I'm basically down to ms, lupus, or als." These three conditions are fairly serious, one extremely. I'd think ALS was off the table after two years of looking. Many people are dead by that point, and if not it is extremely obvious to their treating physicians exactly what's going on by then.

I don't know as much about lupus diagnosis, so I'll not hypothesise on that one. My point being that sometimes when we experience a lot of symptoms, they're not necessarily related. There's not necessarily a condition that explains them all. Multiple things can happen in our body without relating to other things happening in our body.

That's not satisfying, I know, but in the absence of a clear diagnostic picture, I'd focus on treating my symptoms and maintaining good communication with my medical team instead of having a mental list of likely suspects. Time will tell if any or none of those three apply, but life's not an episode of House. Sometimes our body's do weird, unpleasant, destructive things without an appropriate label for them or any relationship between them.
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9671341 tn?1443128711
Thanks so much for that info!
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
You must be so confused, please try not to panic about ALS at this stage, like MS there is a diagnostic criteria and if you haven't as yet had all the tests that rule out alternative conditions, there is still the possibility that it isn't ALS!  

"Criteria for the diagnosis of Amyotrophic Lateral Sclerosis
The diagnoses of ALS requires the presence of:

*Signs of lower motor neuron (LMN) degeneration by clinical, electrophysiological or neuropathologic examination,
*Signs of upper motor neuron (UMN) degeneration by clinical examination, and
*Progressive spread of signs within a region or to other regions, together with the absence of:
*Electrophysiological evidence of other disease processes that might explain the signs of LMN and/or UMN degenerations; and
*Neuroimaging evidence of other disease processes that might explain the observed clinical and electrophysiological signs.

Steps in the diagnosis of Amyotrophic Lateral Sclerosis
The diagnoses of ALS is made possible by:

*History, physical and appropriate neurological examinations to ascertain clinical finding which may suggest suspected, possible, probable or definite ALS,
*Electrophysiological examinations to ascertain findings which confirm LMN degeneration in clinically involved regions, identify LMN degeneration in clinically uninvolved regions and exclude other disorders,
*Neuroimaging examinations to ascertain findings which may exclude other disease processes,
*Clinical laboratory examinations, determined by clinical judgment, to ascertain possible ALS-related syndromes,
*Neuropathologic examinations, where appropriate, to ascertain findings which may confirm or exclude sporadic ALS, coexistent sporadic ALS, ALS-related syndromes or ALS variants,
*Repetition of clinical and electrophysiological examinations at least six months apart to ascertain evidence of progression.
http://www.alsa.org/als-care/resources/publications-videos/factsheets/criteria-for-diagnosis.html?referrer=https://www.google.com.au/

Firstly, focus on is getting that neuromuscular specialist appointment happening, your neuro should have arranged the appointment for you, if he/she didn't, please call the clinic and get that referral!  There are several neuro-muscular diseases and a specialist will be who you need to see if ALS is what your neuro is thinking, please keep in mind that your test evidence may be incomplete and isn't telling the entire story yet........breath!

HUGS.........JJ  
Helpful - 0
9671341 tn?1443128711
Well just got back from neuro and she again says I should see neuromuscular specialist.  The only one that fits my symptoms is ALS I really do not think this is als. She is also ordering a barium swallow test which is good. I've had to have esophagus stretched about 4 yrs ago. I also called to find out about my rheumatologist referral and they said that the doctor(rheumatologist) feels I need to see neurologists.  He feels he can not help me. I'm so lost and getting so frustrated. Expecially with this new symptom that is effecting my eating :(
Helpful - 0
9671341 tn?1443128711
Ya my doctor is pretty sure it's not lupus either. I don't really have any of those symptoms other then photosensitive but I think that's me being sensitive to heat since I get extremely weak in the heat and hot showers.

Ya the neck thing is hard to explain.  My hole neck does not get weak it feels like the muscles u use in your neck while chewing and talking. I have felt my neck while chewing and looked at muscle diagram to figure out what it is but I have no idea. While chewing one bite of food the front part of neck maybe my esophageal muscled get tired of me chewing and kinda feels tensed up. Like my knee does when it's very fatigued from pt. The same with talking.  I think that explains it a little better maybe. I see my neuro in an hour so I'm hoping she knows what this is and can help cuz I'm not eating much :(
♡♡
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
As far as i'm aware, the ANA can be a false positive so you also need at least 4-5 of the criteria but typically with Lupus the ANA will come back positive in virtually everyone with lupus at anytime, a negative ANA test usually rules out lupus and if you also don't fit the Lupus criteria either then it's very unlikely to be Lupus...

"The “Eleven Criteria of Lupus”
1. Malar rash – butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash – raised red patches
3. Photosensitivity – skin rash as a result of unusual reaction to sunlight or sometimes a flare of other lupus symptoms after sun exposure
4. Mouth or nose ulcers – usually painless
5. Nonerosive Arthritis – (bones around joints do not get destroyed) in 2 or more joints with tenderness, swelling or effusion
6. Cardio-pulmonary involvement - inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurologic disorder - seizures and/or psychosis
8. Renal (kidney) disorder - excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder - hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder - antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA) – positive test in absence of drugs known to induce it."
http://www.lupusresearchinstitute.org/lupus-facts/fight-lupus/what-you-should-know-about-lupus

I've had communication issues since my big bang on 09, over the years it eventually became one of my everyday issues.....talking and chewing make it harder for me to get the sounds out of my mouth right, but getting hot and or fatigued bring it on too. I can get stuck anywhere with words with multiple syllables so the sound gets elongated (think drunken slurr or stutter). Too much chewing makes getting the food where it needs to be to swallow more difficult, talking after a chewy meal makes verbal communication that much harder.

I've been wracking my brain trying to work out what you could mean in regards to your neck being fatigued, the only thing i can come up with is to do with swallowing, is that what you mean or has it got more to do with your neck feels weak so your head fees too heavy for your neck?  

Hope that helps......JJ    
Helpful - 0
9671341 tn?1443128711
Ya I had the ana done, that was negative. Do u know if that only shows positive during a flare up?
Helpful - 0
5265383 tn?1669040108
I have experienced that.  It was related to an ms relapse and didn't stick around afterwards.  I also had trouble swallowing, and maintaining conversations, at the time.

I'm so sorry you are still without answers.  I know how difficult that can be.  (((hugs))), Tanya!
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1 Comments
To rule out Lupus all you need is an ANA blood test if it is positive they give you an anti DNA blood test if it is positive then Lupus might be what you have. If negative no Lupus. I think ALS is off the table too. Your GP can do these tests.
Alex
9671341 tn?1443128711
I don't know how I hit best answer but it works lol

Ya I feel like als is off table too.  The cognitive therapy has helped alot. I just started pt and ot so here's hoping that that helps some as well. So far I haven't found a fatigue med that helps that I don't get a bad side effect from. I have tried nuvagil, provogil and now adderal. Which neuro says it's the last thing to help with fatigue.

The feeling in my neck is like it's getting tired of me doing the chewing or when I am talking alot. I know this is a weird thing and is hard to explain. But to me it's very worry some since it's affecting me eating.

Well I hope in time I will have a diagnosis so I can get some proper treatment since I feel like I am continuing down hill with nothing really helping me feel better even slightly.  

Thanks for both of your replies!!! I'm glad you both are still around!!♡
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Hi and welcome back..

To be honest i'm not sure what you mean by "fatigue like feeling in my neck when I am chewing or talking alot", i understand having fatigued oral and jaw muscles from chewing or talking but not why the 'neck' would be where your feeling the weakness....repetition can affect specific muscles depending on what the action is, and making those muscles less responsive or feel weak, sluggish, heavy, lacking control etc the muscles in your neck aren't particularly involved with chewing and talking so i'm a bit confused on what you mean sorry!

Lupus, MS and ALS have a lot of symptom similarities but the diagnostic test evidence for each condition is quite different, do you know what evidence you have that's got all three on your list or why it's not been ruled out yet?

Sorry i don't think i've been much help but i'd like too.......JJ    
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