I need a diagnosis

[TamaraG]

I am in progressive decline. I have regained nothing I have lost. I do have good and bad days. Correlates with more activity and illness. Today is difficult as I can’t seem to get on top of my migraine. I feel I never got over the flu. I’m waiting to move into an ADA adaptable apartment and I’m too weak to do any of it myself.

I’m hoping pulmonologist can help me. Spirometry will let me know if my theory is correct and my respiratory muscles have weakened. If I’m wrong, maybe he can shine a light onto why I feel like I’m suffocating inside my own body.

 

[lgelb]

If you have access to even a borrowed fitness tracker or watch, that could tell you something about what your O2 sats and respiratory rate are in sleep and whether your sleep architecture is normal.

 

[TamaraG]

I have known mild OSA. I failed CPAP as it made sleeping more difficult and migraines worse. I could not sleep with it on my face. I am non compliant with dental devices. I remove them in my sleep. Per my last partner, my restless legs worsened and my snoring worsened. We went to separate rooms. He snored too. That relationship is over. I do have a Fitbit. There has been a change in my sats and RR. In my heart too. That’s why I have the Fitbit. My heart was too sluggish. Now it pumps too fast.

Worsening restless legs was one of my clues something else was going on with me. I had to ask for medication.

 

[TamaraG]

Maybe my story will help someone. Is it my spine or brain? Maybe both. Still no rule out or diagnosis. My lungs are good. Pulmonologist ordered more tests to see if my breathlessness is neuromuscular. Have on the books. He intuitively doesn’t think my heart is involved. Believes changes in my hands can be explained by disease process in my neck. Can’t explain bulbar symptoms.

Podiatrist believes changes in feet/ ankles is related to my L5 fracture,printed me out a dermatome map. Believes steroid injections will help. Encourages spine surgery if offered. Can’t offer an opinion on what is happening with my face and mouth.

I moved into a studio apartment that works well with my new body. I have more tools to help me do things. There are scissors everywhere. I banned glass from the premises and I have squishy mats in zones where I’m most apt to drop things.

I see spine surgeon next. Maybe he can order tests to evaluate the demise of my face as I knew it. I’m not sure what that entails. My PCP claims not to know what to do here.

Now I wait. To disintegrate.

 

[Nikki J]

I am sorry you are still struggling. Congratulations on your move. My move to an apartment from a multilevel house was a great thing. Word of caution mats and area rugs can be trip hazards. It was one thing my clinic particularly asked about and warned against

 

[TamaraG]

I love this for you! My change in space has helped me tremendously with whatever is happening to me. I definitely get better sleep and I can shower alone safely. I can only imagine how limiting your house was. I just need to work out cleaning. I’m neat and tidy. I can’t scrub. I thought the uncomfortable part was going to be the first time a friend has to help me bathe. No. They are all medical people and I have no sense of shyness there. I think I will need to ask one to clean my bathroom for me first! A friend I have known since we were babies in the Nixon era is coming for a visit this week. Maybe I will start with her. Funny. I am more at ease with asking someone to wipe my butt than I am to ask them to clean my toilet. Could have something to do with working in GI.

Area rugs are dangerous for me. I take them personally. I feel they are all trying to kill me. The soft mat in front of my sink is fine. The edges are sloped. I wish I could do the entire apartment. Like flubber. So far the one by my bed has been helping. I have not fallen since. I see it and remember my legs don’t work as well in the morning. It also makes for a softer place to drop my phone multiple times a day.

I see the neurosurgeon tomorrow. I have no idea what he will say. I’m curious about what he will say about my face. I think my left big toe is paralyzed now. My uncertainty is that sometimes I can make it move a tiny bit. It looks like a reflex. The podiatrist was able to force a greater ROM temporarily by forcing my foot into dorsiflexion. I don’t know if this is significant. The test of my respiratory muscles is next week as well as NFL labs. Maybe I will get some answers.

 

[TamaraG]

Neurosurgeon does not feel I have a diagnosis other than known spine disease. He put in urgent referrals to rheumatology and back to the Neuro who sent me to him. I am not a surgical candidate. I feel that I officially have the diagnosis of undiagnosed now.

 

[TamaraG]

I don’t believe I will find an answer. I do want to say I think I figured out where the breakdown happened in healthcare. It’s when we stopped taking our clothes off as much. Being touched. Palpated. Physically examed. They became addicted to the imagining reports. Instead of really examining and listening to us. I think I may be served if only someone palpitated my abdomen. One of my best teachers showed me how his MD diagnosed him by looking at his hands.

Baclofen 20 mg 3 x has relieved my spasms and fasciculations. Best, it has silenced my migraines permanently it seems. I only have aura.

It is when they had to jam more patients into the day. I was working from inside it and saw the decline in care. I saw the decline in the happiness in physicians too. I think it’s why I stuck to specialists that had to probe orifices. Seriously!

They get to spend less time with you. It’s more about metrics. Clicking boxes. Fighting with the insurance companies. I was the one not afraid to be work mom. I would try to help them remember to care for themselves. My most precious I used to force into a closet and make her eat a protein bar.

 

[TamaraG]

I am admitted to the hospital. Lumbar puncture next. They have issued apologies. I am correct. The reason so much is hard to diagnose is why I think. Healthy people get shifted into the anxiety box. If you only look at the data and not the body, that’s the problem. Medicine needs to be hands on again. Where they undress you. Smell you. See your body. When I asked that one of the physicians involved in my care be asked to retire now, it was heard. I think this is going to shake it up for a minute. I hope I was able to help people with my agony.

 

[JAM]

I hope you get answers. You have been on a very unfortunate path to where you are now. You deserve some kind of resolution.

 

[TamaraG]

I feel heard now. I am making them see. I asked that my sister can smack Atul Gawande for me. He is part of the problem. A wise nurse friend saw something in a video about my shoulders. It reminded her of a chromosomal MD that inflicted a family she knew. Interesting.

 

[TamaraG]

They scrapped lumbar puncture. Diagnosed with FND and was discharged to home Health. Not sure if anything else is happening. I’m satisfied. I wanted help and I’m getting it. Waiting on PT to come soon.

 

[Nikki J]

Thanks for letting us know. FND as you presumably know is treatable and pt is a good start. Best of luck to you!

 

[TamaraG]

Thanks for the support. They may test me more, but it’s a huge relief.