Frustrated and still waiting for answers

[Signe]

Well I can't believe I came back to this forum but after 6 months I'm still without symptom improvement. I haven't been diagnosed with anything. I gave my heart to these symptoms being a stress reaction and or anxiety, I realize stress can cause a lot, but after 6 months nothing is better. If anything things seem worse, I have lost 34 lbs since October. I'm still slurring my words and have difficulty swallowing and I choke and cough a lot, beverages come out my nose sometimes too. I get shaking and trembling. My face is numb and has a pins and needle feeling. My right arm is just not right, and I am always tired. I didn't go to any doctors over the winter, I tried to relax and go about my normal life but in April I had a weak spell and realized how much weight I was losing, at that time it was 25 lbs, so I went to my GP. He repeated all my blood tests which came back normal. Then I saw my Neurologist who repeated the MRI. I don't know if that had any changes but since he hasn't contacted me, I assume that nothing much changed. Monday I have an appointment for a repeat of the EMG. I don't know if I should do all these tests, I seem perfectly healthy and the costs of tests is so high. Nothing shows up wrong but I'm still not better and I am so frustrated with my body, the costs of tests, and talking like a drunk, but hey I've lost weight and look better in tight jeans now, that's kinda nice. I still have spasms in my throat. I saw a ENT md who did a scope, nothing was wrong there, but she wondered if I was having laryngeal spasms. At times I think I could be having laryngeal spasms as I can't talk or breath for a few seconds but I also have spasms across my whole throat, like Charlie horses.

Well my real concern is do I keep having tests or do I try something else. If I should try something else, what would that be? I thought maybe a spinal tap but md didn't want to order till all my other tests were done. I don't believe that I have ALS, I think it is something else, but what?
Thank you

 

[GregK]

Sorry, we do ALS, not guesswork.

If you don't believe you have ALS, we cannot help and you don't belong here. :-(

 

[lgelb]

Note: Signe's previous thread here.

Signe, I don't doubt that something is up. I'm not clear on why the ENT would say she "thinks" you are having spasms. I'm not clear who's herding the cats in terms of developing a plan that will help you feel better. If you need a better cat herder, there's more than one PCP in the sea, certainly some at UI. Where does your PCP stand on recommended next steps?

Did you have these 34 lb to lose? Sometimes we CALS do lose a lot when we are no longer as dependent on someone else's diet/schedule and have our own.

Have you sought grief counseling just to make sure that is not a factor?

I don't think you have ALS, either. I just don't completely understand what has been ruled out and what if anything is still on the table. You might take a look at the "Getting a Diagnosis" sticky for questions to ask. Unfortunately, we can't answer them as well from here. But you should have them answered if not as yet, so you can move on.

Best,
Laurie

 

[Signe]

Thank you, I have been slurring my words for 18 months or so, I have also had right leg weakness and lose of fine motor in my right hand. The neurologist says he can't diagnosis anything yet. Probable MS was one of the possibilities, but I don't meet criteria for diagnosis. At this point in my life, though my family is concerned, they are as frustrated as I am. Weight lose just happened and I am now at a slightly lower weight than I should be. Eating is hard work and chewing is tiring. My mother passed away 12 years ago with ALS, I miss her everyday. I did grief counciling with my father soon after she passed. I just don't know what else to do. I have another EMG scheduled for Monday, I expect it to be normal.
I just don't know what to do anymore. I appear healthy, though thinner, I can walk normally and other sounding like a drunk, I appear just fine to acquaintances. I don't think this is ALS, as I have weak spells but then get stronger. But the speech, chewing, swallowing and throat spasms persist and never improve.
I thank you again for listening to me rant. I just felt like I needed to get it out I guess. As the previous comment from suggested I maybe don't belong on this site.

 

[Signe]

Finally a answer! Thank you to whom ever suggested a new cat herder! I have been diagnosed with neurosarcoidsis. I had sarcoidosis oh 30 years ago or so. I had repeatedly asked my Neurologist if my syptoms could be sarcoidosis and he'd always tell me no. Finally a lumbar puncture result suggested sarcoidosis.

So I pointed this out to my Neurologist who then told me that I couldn't have sarcoidosis cause Caucasian don't get it. Well I told him that I had had it and he said, how did they diagnosis that for me...very sarcastic. I told him how it was diagnosed with a biopsy of a lung granuloma. He literally argued with me about being able to get sarcoidosis cause I was white. I'm am very upset at this point and yes I complained about his performance and got to another md who said he knew about sarcoidosis.

So back to Rochester to pulmonary and finally an answer and I can get treatment and I may feel like a human again.

I had to write this out I hope it may help someone else who finds themselves in a similar situation. I have had the longest, worst, painful, worrisome, scary, stressful two years of my life, my emotions have been a complete wreck, I thought suicide might be easier than going through this, (I'm not suicidal, I just had a few really bad days). I put my trust in a doctor that I just realized I shouldn't have, I did test after test and repeated them, and it was all so painful in so many ways.

Neurosarcoidsis isn't very common it is very raw in fact but my syptoms matched bulbar onset als, so it was all scary. I won't be back on this site, I have appreciated everyone who has helped me through difficult days. I just wanted to try and help someone else who like myself couldn't get answers. One other suggestion I have is try a different approach or doctor that has experienced more. Thank you.

 

[ShiftKicker]

Thank you so much for coming back and providing punctuation in the diagnostic journey you have shared with us here. I am VERY glad you will be complaining about your previous doctor, as it sounds like a pretty serious mismanagement of your case- especially given your prior health history.

I am so sorry you have gone through this- I hope your treatment helps with symptoms and provides some relief for you.

 

[lgelb]

Glad to hear the pertinent cats have been herded, Signe. As it happens, I knew a white female who had sarcoidosis, hopefully still does. All the best.

--Laurie

 

[Nikki J]

Thank you for returning to tell us. Best of luck as you pursue treatment. I am so sorry you went through all that

 

[Bestfriends14]

What a horrible ordeal you had to go through. I'm glad you finally have an answer and can be on the road to getting the proper help you need.

Thank you for coming back to report.

Good luck to you and take care!