I need a diagnosis

TamaraG

Member
Joined
Nov 12, 2024
Messages
12
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
OR
City
Portland
I hope this is ok. I do not have a diagnosis. I fear I may not be able to obtain one. I do believe I have ALS. My troubles began with a poorly healing spinal fracture. It met a painful process in my neck my neurologists never seemed interested in. I have a complex migraine disorder. When the spine surgeon wanted to rule out motor neuron disease, I thought he was being thorough. Now I see the changes and I am increasingly more disabled. I have significant to me facial, neck, hand , and foot atrophy. My neuro NP has noted this. My gynecologist saw pelvic fasciculations. I had a negative EMG with a neurologist I do not trust. She told me the changes in my body were normal aging. They are not. Not even for the elderly.

I worked in healthcare until I couldn’t. I live healthy and know my body. I’m not sure how feet that walked and hiked as much as mine can atrophy like that. Same as my hands. I was a baker and massage therapist. I handled surgical instruments. Now I have trouble opening a jar.

I am now homeless. My bf kicked me out when my EMG was clean. He decided that meant I am lying. He is stuck at anger in his grief process. He can see the changes in my body and function.

I have no way to support myself. I’m in a hotel until I can find housing. I have funds for about 6 months. From what I understand, I have no recourse. All I can do is wait to decline. I do not understand why I can’t get any support. With or without a name, I’m in decline. My gait is impacted as is my speech. I have dysphagia. My lips are so weak, I dribble food and drink. I don’t feel safe in the shower unless a friend is nearby.

Thank you for reading. I have never felt more afraid. I think they told me that there is no help.
 
I am sorry. If you do not trust the neuro get a second opinion. There are alot of diseases though that cause atrophy that are not als and don’t show on emg. Long covid is one of the most common ones

Who is they who told you there is no help? No help for what?

There should be programs to get you rehoused. Yes homelessness is rampant but for a motivated person there should be some supports you can access. I know here in Boston there are both state programs and private ones. Do it now before you are broke. Get medicaid if you have not already

Was there domestic abuse or violence? Throwing you out and making you homeless sounds like it is likely? DV resources are another path if so

I don’t know if ssdi is possible. Ssdi and medicare are automatic for als but it is possible to get ssdi for other disabilities with medicare coming later
 
I am in Portland, Oregon. We have a huge housing affordability problem. Boston sized rent without the pay. I am too disabled to work. My SSDI is in appeal.

The “they” I referred to are my current neurological practice and my neurosurgeon’s office. I have known my PCP for 20 years. We once worked together. He put in a referral for a social worker. I have Medicaid for now. I consider it DV now. I think whatever my disease process is led me to move in with a man atypical for me. I had been living alone happily since divorce.

It is difficult to get a neuro consult. One of the spine surgeons called me 6 months after referral was placed. Offering me an appointment in 3 months. That would be a 9 month wait. I had to apply for the practice I am currently at. Originally for migraine treatment. I had to stop working. My old neurologist doesn’t take my insurance. He was no help. Whenever I approached with a new symptom, he would advise Advil. My pharmacist recommended medications. He prescribed. That’s it.
 
Just had a look. Not remotelyBoston sized rent but I get unaffordable for you

Try accessing dv services and try to make appointments at multiple neuro practices then get on cancel lists. If you are available on short notice likely something will turn up. Last year I turned a 6 month wait into a 6 week wait because someone canceled. Especially likely during flu season too.

Unfortunately we can’t diagnose you or even help your housing issues. I wish we could
 
I have not lived on the east coast in some time. I apologize if I think rent is crazy high here. I have been corrected. I’m not sure what I was expecting here. It is all incredibly frustrating.

I was hoping maybe to find a person in my situation. From my understanding, it is not easy to get diagnosed. I want to know how people manage symptoms without a diagnosis.
 
There is a fb group for undiagnosed neurological disorders. May be they will have ideas
 
I don’t use FB. I thought it was ok for people that were legitimately symptomatic and struggling for a diagnosis to maybe find others. I am not co opting a disease. I guess it’s best I just read old posts for helpful advice. My apologies if I am here in error.
 
It is hard to believe that any neuro in Portland would deliberately overlook signs of ALS on an EMG, as that would be a slam dunk lawsuit. The tracings are the tracings. If you want to post the de-identified report, we could be more helpful.

I agree with Nikki that it's more likely this is systemic, so since your PCP sounds like they care about you, I would ask them to refer to a complex dx clinic at OHSU, where I believe Medicaid is accepted.
 
My neuro NP says OHSU blocks her referrals. They are out of network. I have Care Oregon. That excludes OHSU/Adventist. My symptoms accelerated after I have seen my PCP in person. I do see him again in a couple weeks. Most of my friends work in healthcare. They can see the changes. I had a CRNA friend and his MA wife who have known me for a decade look me over to tell me if I was just imagining the changes in my body. They see what I see. Same as my RN friends. One was waiting for me to tell her why I have a tremor every time we hug. Another was concerned about my voice change. I reached out to an MD ex. He started crying when he heard the changes in my voice and speech.

At one point, I was told I had cervical spondylitis myelopathy. Then there was a question of that and ALS. I was following all the advice. PT was my job. I wanted to get back on a bicycle and paddle board. I was motivated. I can only ride a stationary bike and I can’t lift my own board.

I was able to calm myself in the night. If I am correct and this is as degenerative as it feels to me, I will worsen and maybe help will be available then. I do have a neurological NP. She was not able to diagnose me now. I am still in her care for migraines.

Thank you for listening. I know there is something major happening in my body. It seems neurological. I guess for now I just learn how to manage. My biggest problem is my feet and how to eat. I’m hoping my PCP can help with this. I’m seeing a Pulmonologist for my breathing issues. I can’t get in for a couple months, but I have seen him in the past. I trust him. Smart and compassionate. He may have advice.
 
Really? OHSU's site lists CareOregon as accepted. Sometimes it's on a clinic basis, but ordinarily it would specify that.

If a neurologist or orthopod told you you have spine damage (the CSM), I would believe and pursue that, if only from the PT standpoint for now. Your PCP can order it in most Medicaid plans.
 
OHP has different avenues. Sorry, I can’t think of a better word. I’m struggling today. There is a plan where you can get Kaiser. The one I have where I can go to Legacy and Providence. Then there is an OHSU one. By choosing the plan I did, I was able to retain all of my providers with the exception of a neurologist at Adventist I never liked. He blew off all my symptoms for five years.

I did realize something. My spine doctor ordered an EMG that is still on the books. My neuro NP had ordered a different one urgently. It was an odd experience. It felt like malpractice and I don’t say that loosely. I worked in healthcare most of my life. The MA asked if it was my usual BP. I told him no. My heart function had changed recently. It went from beating too slow to too fast and I was having chest pain. It felt muscular, but I could not be certain. He made no action on that. The room was freezing cold and I don’t have much body fat. They said they didn’t have blankets. I begged for a sheet at least. The exam table was up against a window with a draft. It was near freezing outside. I was shaking from the cold. For two hours. She rolled her eyes when I asked if I could keep my socks on until she needed them off. I lost padding on the bottom now. I’m uncomfortable barefoot.

Maybe I just need a repeat with a different provider. My neuro NP saw me right after the EMG I had. She does not feel the changes in my body are normal aging. She did validate something is off.

It seems nuts to me. Clearly what is happening with my mouth alone should be investigated more. Since my facial muscles have weakened since I saw my PCP last, I’m hoping he will be able to send me for a nutritional consult. I have a free one through Care Oregon. She can only give advice for what I am diagnosed for. If he can see how chewing is getting difficult, maybe he can code that.
 
I want to thank the people who replied to me. It was helpful at the scariest time. I still don’t have a diagnosis or a rule out. I feel awful and have totally lost my quality of life, I don’t care if I am diagnosed now. I have other stuff that complicates my situation. Complex migraines. Poorly healed spinal fracture. Question of CSM and MND. I am working on symptom relief and I have found some hints here on handling the sinus congestion better. I was scoped by ENT. Nasal wall collapse was her verdict. I am motivated to see pulmonary next. I feel my muscles are weakening. Curious what he will say. Hoping I get real help. So far I have been diagnosed with dysarthria, muscle weakness, nasal wall collapse, mild foot atrophy, fasciculations, the light chain lab value I do not understand is off, and I am forgetting something. I don’t want this to be ALS. My last EMG was abnormal and the neuro felt it did not correlate to my symptoms. He could not explain my facial deformity.

Since I don’t have a diagnosis, I feel like a stalker here. I appreciate your time and kindness. All the best to you. I will hold you in my heart and hope that you receive the care and comfort you deserve. Is there a way to have my posts deleted as I don’t think they add any value?
 
If you want, they can be deleted. But lots of people without a diagnosis visit and your posts could be of value, so I will leave them unless you request otherwise.

Feel free to circle back if/as you have a diagnosis to share -- it does help others.
 
If you think they contain anything useful, then leave them up. My life was about helping people who are ill or in pain. I wish there were a way to calm the folks that fixate on a twitch.

I will drop a line if I ever get a verdict on my mess. I do have one question. Did you just completely lose a finger or did you have tiny use? I can tap my index finger to type at you on a touch screen, but it can’t unlock a Tesla door or push down on a syringe. Sometimes I can’t move my left big toe at all and sometimes I can get it to move slightly if I use all my might.
 
ALS onset is not about immediately losing a finger entirely, if that's what you're asking. But if focusing can make a toe move, that's a strong argument against ALS. Motor neurons don't respond to mental energy. You can have better/worse days but it's not mind over matter.
 
Back
Top