Neuromuscular referral

[KiraM]

This is just an update..
My GP is sending me to a neuromuscular specialist in Omaha. He is concerned about all my symptoms and simply stated “I’ve tested most things I can test, and it’s simply out of my knowledge range.”. I’m grateful for him, I had a pulmonary test that came back fine so that’s a plus. He did find that my T4 of my thyroid was elevated by .3-but it’s not that significant-however he’s referring me to and endocrinologist as well because it’s the only test that has come back with anything. He has done ANA, Lyme, Mono, Thyroid, and more. He’s calling Monday to let my mother know when I can get in to see the specialist. In the meantime he prescribed muscle relaxers. I’m really scared but I know that this is a step to finding out what’s wrong, my new symptoms are scaring me a lot though);

 

[KarenNWendyn]

Kira,

You have had a clean EMG.
You have been cleared of ALS.
We have closed your previous thread.
Yet you remain obsessed.
Your GP is not an ALS expert.
Please don’t expect the neuromuscular disease specialist to tell you anything different.

If it takes a neuromuscular specialist to convince you you don’t have ALS once and for all, so be it.
No need to post here anymore.

 

[KiraM]

I know, my GP told me als is ruled out because of the ‘MRI, and proceeded to argue a bit that the EMG is what ruled it out. Although he admits to not knowing much about neurology, only stating my reflexes are 2+. And that he’s referring me to Endo and neuromuscular specialists.

My mother is very scared and it’s so hard to see her like that, she cries seeing me laying in bed not doing the normal “me” stuff.


I’m sorry to be back Karen, but truly, I mean no harm or upset-I care deeply for you and whomever is affected by this disease.


Please don’t block me); I promise if you tell me to leave or I’ll be blocked then I’ll leave

 

[ShiftKicker]

Kira- I have to agree with Karen here. This simply is not the forum for you and can't be used in lieu of real emotional support from people who you can talk to in person, nor is it an appropriate hang-out for someone who does not have ALS.

The folks here have ALS or are caring for someone with ALS, and simply aren't equipped to provide you with the care you need. This must come from family, a trusted adult, a school guidance counselor or a therapist who can help you through what appears to be a stressful time in your life. If you do not know who to turn to, your family doctor can provide resources. This is important- as your continued presence here signals that you are in need of more care than you are currently receiving. Unfortunately, the folks here are not to be leaned on in such a way- this isn't the type of forum for that.

While we are happy to receive reports of the findings of the specialist you visit, which helps future seekers, any continued attempts to engage here on a daily basis or to just chat will be met with a closed thread.

 

[KiraM]

Thanks ShiftKicker. I’ll wait till I see my specialist-and refrain from posting until then.. Cramping under my chin and tongue stiffness just set me over the edge.


Promise to stop posting until the neuro- thank you again-and thank you for not closing my thread-I’ll report back to it after my specialist

 

[KiraM]

Had trouble swallowing and eating and just living. Went to my GP-he said go to the hospital. Admitted to hospital-blood tests, repeat brain mri, spinal tap. I am so scared to end up like poor little Haley..my doctors will hopefully find something out. I have lots of doctors working with me so I am hopefull

 

[KiraM]

I have a vitamin D deficiency of 17 (supposed to be around 80) and adrenitis and tonsillitis which they believe is causing a Eustachian tube dysfunction. I really hope this is what is causing my problems

 

[KarenNWendyn]

Kira, as we’ve told you, this isn’t a general health forum or an anxiety babysitting service.

You’ve been cleared of ALS.

I’m truly sorry you’ve had such a difficult time with your health, but you don’t belong here, and that’s a wonderful thing.

I’m hoping your doctors give you guidance on dealing with the problems they’ve found.

And I hope you get help for your anxiety, which is really crippling you.