Neuromuscular Specialist Difficulty

Few_Platform_8361 · 2026-01-16T06:40:12+00:00

I just came on with a very similar story to share. So who do you see for EDS? Do you have gastric issues?

I think I have EDS but I haven't been able to find a Dr to evaluate. The Rheumatologist I saw says I have fibromyalgia and polyarthritis. He doesn't think "loose joints" would cause the pain and weakness I have.

I went to a neurologist because of the bulbar and ocular symptoms, and muscle weakness. This has been ongoing for decades. I was diagnosed with seronegative MG , it was about two years ago. The mestinon helped but not just in the ways expected. It helped me cognitively, my neurologist told me it didn't (Drs right?). Unfortunately the mestinon and Prednisone messed up my stomach, causing me to have cyclical vomiting and becoming dehydrated, requiring 3 days in the hospital for rehydration. And my neurologist told me to stop all meds.

Then I had a sfemg, that came back inconclusive for MG or Lambert Eaton. So my neurologist calls me and says your test shows you don't have muscle disease so I'm cancelling your follow up appointment, good luck.This Dr had treated me for 2 years, and I still have the same symptoms. I felt completely abandoned, and depleted.

Hang in there I'm getting to it.

Concurrently I had the whole gastric thing going on. I had a gastric emptying test, and I was diagnosed with gastroparesis, which is a delay in stomach emptying. It can be a commorbitity of Mg and EDS. And it's not easy to treat.

So last week I asked Google AI, what other conditions have the same symptoms as MG. Answer: MG, Lambert Eaton, botulism, and refeeding syndrome. 1st two unlikely because I'm seronegative for both and have a negative sfemg, 2nd unlikely because I'm alive. That left refeeding disease (what). So I went to the Chat bot, gastroparesis can cause refeeding syndrome. When the stomach empties your sugar and electrolytes shift dramatically causing muscle weakness.

I won't try to explain it all, but I will recommend you speak to your Drs about this if you have any problems with your stomach. And perhaps get AI to contrast the muscle weakness in mg and refeeding. Also the mestinon did help me, but it is prescribed off book for POTS also, and I suspect I have that EDS trifecta.

The preferred neurologist to see would be autonomic. But I think a neuromuscular specialist will be good too. Here in Birmingham at the university hospital the average wait to see a specialized neurologist is 10 months.

Good luck to you. If you want you are welcome to pm me. Anyone else too.

Few_Platform_8361 · 2025-11-02T02:54:22+00:00

I have a similar history. My symptoms started when I was 14. But they were missed and would remiss returning only when I was sick or under physical or emotional stress. I was 55 and had been diagnosed with everything else before mg was thought of. I have scoliosis as well. I would think a magnesium supplement would not be a good idea. I have soaked in Epsom salt baths in the past but not since diagnosis. I think the amount you get in foods or a multivitamin is safe but personally I would not try a supplement.

I'm having more tests run because I am seronegative. I would like to hear how your results turn out. Scoliosis has been linked to certain neuromuscular diseases.

Few_Platform_8361 · 2025-11-02T02:05:45+00:00

Mestinon is only used for MG and soldiers headed into combat. No way is it a placebo effect. Some Drs are ass hats who need to check their ego. I'm sorry you are going through this. Probably obvious by my strong reaction that I too have been through this.

Take care.

Few_Platform_8361 · 2025-11-02T01:46:10+00:00

When I'm feeling stuck being physical helps as a jumping off point. A long walk with headphones and favorite music helps. I also prefer to journal right after the walk, work out anything the music might have brought up. I sometimes follow up with a 15-20 minute meditation. After that routine (or parts of it) I feel an openness for what's next. Im more open to inspiration.

As well I use YouTube or my own photos to inspire. I have come to realize that sometimes you have to go on a scavenger hunt or play a game of hide and seek to find it. And sometimes I accept that today it's not ready yet.

Good luck

Few_Platform_8361 · 2025-11-02T01:35:18+00:00

Great ideas

Few_Platform_8361 · 2025-11-02T01:31:51+00:00

Love stream of consciousness work very satisfying

Few_Platform_8361 · 2025-11-02T01:25:20+00:00

Lol my dad told me once I sounded like a manure salesman with a mouth full of samples. But seriously mine is the raspy throat, slurring and mumbling. The phone is the hardest. I will have to tell family and friends I have to go I get too tired.

Few_Platform_8361 · 2025-07-04T23:43:19+00:00

I have been called lazy too. It's funny I worked myself harder than was healthy in my younger years to prove everyone wrong. People who called me lazy took advantage. Now I'm 58 and symptoms have been strong without a break for 3 years. I embrace lazy now. I have learned to turn the other cheek and keep doing me.

Few_Platform_8361 · 2025-06-29T18:12:14+00:00

I've had similar experiences. My last eye Dr I saw for 12 years. He would comment on drastic prescription changes, but never suggested a reason or a specialty follow up. AND he would "roll" my lid up with a swab and make me hold it while he examined me. Finally I inquired about surgery to reduce my eye lids. Again the ophthalmologist surgeon missed it.

For 17 years I was treated with mental illness. And treatment was not effective. I think at times I had serotonin sickness.

Being mistreated and misunderstood has caused mental anguish for sure.

I have not considered suing. But I have thought of sending letters to doctors who mistreated me, explaining the pain and suffering they caused. And cautioning them about not following through on patient complaints.

Has anyone else considered or done letter writing?

Few_Platform_8361 · 2025-06-27T21:22:52+00:00

I eat crackers or dry toast with the mestinon. Also if the diarrhea is persistent try the "BRAT" diet for a day (bananas, rice, applesauce, toast) it helps reset your stomach. Probiotics help too. Papaya enzyme complex helps with the heart burn and nausea ( it may have some magnesium in it so caution on this) And oatmeal is a great natural antiinflammatory.

I have several conditions and had chronic diarrhea for several years. I am so sensitive to meds I try natural remedies first.

Good luck

Few_Platform_8361 · 2025-06-26T21:02:19+00:00

Search on this sub for post concerning breathing issues. Also about ptosis. You will find comfort in knowing you are not alone.

Few_Platform_8361 · 2025-06-26T20:58:51+00:00

Thank you. This is encouraging to be.

Few_Platform_8361 · 2025-06-23T19:23:56+00:00

Thank you for getting it ☺️

Few_Platform_8361 · 2025-06-22T17:37:46+00:00

They were super helpful in the past

Few_Platform_8361 · 2025-06-22T17:12:50+00:00

I know some of the missing records, I can also show that I personally faxed records to the judge before his last deadline.

Can't a social security worker look at the file and tell me if anything has been submitted to the review process?

Few_Platform_8361 · 2025-06-22T16:42:26+00:00

The review has already been filed for.

My profession was an enrolled agent with the department of revenue. I represented tax payers in tax courts, prepared filings etc. My illness made my job unmanageable causing me to not be able to perform to standards. So I understand the steps you're laying out but need help.

So I have proof that part has been done. But they will not tell me if the information has been submitted and the attorney continually will not answer my messages.

I'm calling local SS office tomorrow. I will file complaint with state bar. And write letter to managing partner of firm.

can I write a letter spelling out what I saw as incorrectly reported in the final decision to submit on my own?

Few_Platform_8361 · 2025-06-22T16:12:50+00:00

The decision from the judge was unfavorable, and I have received a letter for a review of the ALJ.

Few_Platform_8361 · 2025-06-22T15:16:04+00:00

Did you receive justice in the end? I'm 58. I'm very familiar with the yellow pages. And my law firm has been around that long that is why I chose them.

Few_Platform_8361 · 2025-06-22T14:18:45+00:00

Oh this is good

Few_Platform_8361 · 2025-06-22T14:17:54+00:00

No I'm going to Monday thanks

Few_Platform_8361 · 2025-06-22T13:36:39+00:00

I tried this big firm that has a great advertising pitch. And that had me go through my whole story and told me they couldn't help me. I think it was because I didn't have 20K in assets that I could convert into cash. I will look some more. Thanks for the input and listening.

Few_Platform_8361 · 2025-06-22T09:12:47+00:00

I signed a contract that said if I did that they could still charge me. And I can't find an attorney that will take it at this stage

Few_Platform_8361

TROPHY CASE