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Andrea1653

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I had hoped that I would be able to report back with some kind of diagnosis, but unfortunately I still do not have one. Timeline since my last post:

-went to a podiatrist. Has a foot MRI which showed all sorts of things such as tendinopathy, mucoid degeneration, joint effusions, tenosynovitis, edema, diffuse peritendinitis, etc. Course of treatment was an injection in my foot and physical therapy. Neither of these helped and podiatrist wanted to wait for my neuromuscular appointment because he said that with my symptoms/MRI results and the fact that his treatments did not work, things aren’t adding up and he’s not sure what is going on. Physical Therapist also kept asking me when I was seeing a neurologist because they didn’t know why I wasn’t improving either.

-I had been seeing a cardiologist from my last pregnancy and he noticed consistent high hemaglobin and hematocrit levels. He ran all sorts of tests, including echocardiogram, heart is fine. Refered me to a pulmonologist and hematologist.

-Hematologist found nothing. Pulamnoligist did a breathing test. The technician doing the test said that some of my numbers were low. That I was able to get oxygen in just fine, but I was having a hard time getting it out. After a breathing treatment, my numbers went up slightly. I don’t think I should be having trouble getting oxygen out for a supposedly “healthy” 33 year old female. Assessment said ”Dyspnea, unspecified type”. No clue what that means.

-Neuromuscular appointment. This is where I need advice as I just don’t understand. I picked a university hospital (Ohio State University) because of all of the advice on here, stating that those are the best places to go. Well saying my appointment was a huge disappointment, would be an understatement. I waited 5 months for this appointment. The student was the one who took my medical history and did my exam. She seemed frustrated, didn’t seem to know what she was doing and focused most of the time on my past history instead of my current symptoms. Her exam was not thorough, I was fully clothed, didn’t check a lot of reflexes or have me walk on my heels/toes, etc. The neuro came in at the end - he was in there for less than 5 minutes and it seemed like he was in a hurry to get to his next appointment. I tried telling him about my progressive symptoms and my foot atrophy/weekness, and he stopped me and said “I saw you had a diagnosis of BFS. You don’t have Lou Gerig’s disease”. He said this without me bringing it up, I was just trying to tell him about my fasciculations, weakness and atrophy. Now I could understand this statement if he listened to my symptoms and gave me a proper exam, but he did neither of those and neither did his student. He didn’t even look at my foot and just told me it was probably disuse atrophy. How can you have disuse atrophy on one side of your body and not the other?

My symptoms have gotten progressively worse since I posted here last and I guess my question is: just because I have one “essentially normal” EMG, why can I not get anyone to listen to me? My symptoms are getting worse and I can’t get anyone to listen to my symptoms and give me a proper exam. I don’t feel like I should have to wait for a limb to quit working before someone will actually take me seriously, but I think that’s the corner I’m being backed into. Can someone please advise me on what they would do in my situation? I attached my MRI and PFT. Your input would be greatly
appreciated.
 

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lgelb

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Did you have blood work for RA/autoimmune dz/inflammation markers as the rpt suggests? I'm sure Karen can chime in on this.

Given the elevated crit and less than perfect PFTs, I would also ask about a sleep study.

Best,
Laurie
 

ShiftKicker

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Mod note- past thread found here: https://www.alsforums.com/forum/do-i-have-als-als/39749-scared-`don-t-know-where-else-turn.html

Looking over you past thread to familiarize myself with your situation, a few things stand out-

You had a very serious previously existing condition- which, though now resolved, can cause lasting health issues. It really sounds as though a neuromuscular specialist is not going to help you at this point.

You have had a couple specialists tell you there is an issue and urged you to see a neuro. Did they provide supporting documented observations? Did they give you a "Dear Colleague" letter in which they outline some of the things they feel are concerning? Having recommendations and professionally documented observations in your hands is important in this situation.

Are you seeing a medical professional who can walk beside you and provide emotional support as you navigate the medical system? This is where a psychiatrist is invaluable (NOT a psychologist, counselor or therapist). Not only to help with handling the stress of dealing with health issues and the anxiety that arises from health issues, but because they are medical professionals whose observations bear weight with other medical professionals. They can help you tease out which symptoms could be caused by anxiety, which ones are exacerbated/increased by anxiety and which ones are structural/organic. A psychiatrist can tell a neuro "Not all anxiety- here's why." or be able to provide medically informed opinions and advice (and possible specialist referrals) as to who you should see for physical symptoms.

When it comes down to it, finding the source, or sources of your symptoms is of real importance- a psychiatrist, despite everyone's aversion to seeing one- is paramount to that process in cases like yours. This is not a dismissal of your symptoms, but a serious recommendation from a person who got a proper diagnosis as a direct result of seeing a psychiatrist who specialized in somatoform disorders. His specialty allowed him to eliminate the possibility of an anxiety based source, regretfully, but his specialty would have helped me IF it had been anxiety based too. I wanted to get better and accepted I needed to see a psychiatrist. I have never regretted seeing him.
 

KarenNWendyn

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I read your previous thread from September ‘17 as well as the current thread. The time course does not fit with ALS. Neither does the prior history of the normal neurological exam and normal EMG. You have really not described failure of muscle function which would be the hallmark of ALS. I think we can clear you of ALS at this point.

In terms of your MRI, the findings could suggest trauma or tendinitis. And yes, atrophy can result from either.

Unspecified dyspnea is doctor talk for shortness of breath. You did get some improvement in some of the numbers frim bronchodilators, suggesting a component of reversible airway obstruction (asthma). Otherwise, the numbers look pretty good.

So forget ALS. I agree that seeing a psychiatrist would be beneficial for your mental healrh issues. You might also benefit from a physical therapy program for your foot and ankle issues. Your GP can help you with the breathing concerns.
 

KimT

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You forced vital capacity is over 100% or normal. Don't worry about the other numbers. It doesn't look like you had a full pulmonary function test nor a sleep study.

I'm pretty sure ALS is off the table.
 

Andrea1653

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Thank you very much for the responses.

Yes, I have had loads of blood work. Vitamins, RA, ANA, lymes, paraneoplastic, etc. All negative or normal. I think the only blood work that hasn’t been checked is my thyroid levels.

I have not seen a psychiatrist. I have been to several psychologists in the past and they didn’t help me at all, which is why I am so hesitant to see a psychologist. I hadn’t thought about it from that perspective shiftkicker, so thank you. I will definitely talk to my PCP and try to get a referral.

I do not have have letters from the podiatrist and Physical Therapist. I will try to get those and send them to my neuro at OSU. Thank you very much for the suggestion.

While I do not have complete muscle function failure, I do have progressive muscle weakness in regards to not being able to do things I have always been able to do in the past without issue. I have a weak foot, and now entire leg, that makes walking any distance very hard. Small things make the left side of my body feel like I’ve run a marathon and I will have severe achy/sore muscles for days but only on the left side.

I’ve started having problems with my left hand as well as having issues with my neck, back and speech issues when I’m tired or stressed. I am now getting constant fasciculations in my right foot, which I have never had before and I’m horrified that weakness is going to set in soon to that foot as well.

The fact that I waited 5 months for my neuromuscular appointment, and to not have even been given the chance to explain my symptoms or to have a proper exam, is absolutely maddening and has left me feeling very helpless and defeated. I just don’t know what else to do, as I know there is something very wrong and I can’t get anyone to help me.

Thank you for lisenting and for the suggestions you gave me. They were very much appreciated.
 

Andrea1653

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I have a follow up appointment with the neuromuscular specialist at OSU, but the wait is of course 4 months out, on October 30th. I wanted to ask 2 quick questions before my thread closes and then I will post an update after my appointment.

The first question is more about FALS. I’ve tried to research this, but couldn’t really find anything. Famial dementia runs in my family. My great grandmother has it and my grandmother is still living with it. My grandma was diagnosed when she was 79 she is now 90. She is in a nursing home and needs 24/7 care. She can’t walk or feed herself and it’s been this way for as long as I can remember. The doctors told my mom and her 2 sisters that at least one of them will get it. Now my question is that if my mom carries the genetic defect, and I do as well, would I be more likely to get als because of that? Could dementia in other family members cause dementia and ALS in another family member?

The last question is, does anyone have any advice on what I should say/ask my doctor to make them actually listen to me and my symptoms? I have read all of the pinned posts, which are very helpful, but I want to make sure my doctor actually listening to my symptoms this time and gives me a proper exam. I also don’t want to speak with only the medical student. My neurologist only came in at the very end, and I would like to see him for my entire appointment. Is that usually how things go when seeing someone at a teaching hospital?

Any advice would be greatly appreciated and I will report back after my appointment in October. Thank you.
 

Bestfriends14

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Andrea,

Shiftkicker's, as well as others, advice is spot on. Nothing you've described sounds like ALS. Your muscles don't feel as if they've "run a marathon" or are "sore and achy" after doing something in ALS. They simply do not work. Also, symptoms so not appear everywhere within such a short time in ALS.

As for your dislike of the medical student, one of the individuals who gave his opinion, that being the 3rd opinion that my husband had ALS, was a trained doctor and neuromuscular specialist. He was just finishing up his 15th year of postsecondary and work related training. So, that medical student you don't trust, is a full fledged MD most likely completing his neuromuscular and EMG fellowship. He's already been a doctor for several years and completing even further medical training.

Again, Shiftkicker's advice about seeking a psychiatric route before further testing is advisable, as well as taking ALS off the table so you come closer to finding out exactly what is going on.

Good luck to you and take good care.
 
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