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KITT

Member
Joined
Aug 19, 2011
Messages
10
Country
US
State
Arkansas
City
Little Rock area
Hello,

I haven't posted in awhile and I'm sure many of you wonder why I am now. It may be difficult to follow my situation since I don't post very often. But I am posting because I covet the advice and help from people who really know and from those who have been where I am. Also, I hope that something from my experience may be of help to someone else.

I saw my neuro in February for a follow up visit. I did as Alyoop suggested and wrote down my questions and concerns. The neuro didn't seem real interested in me going down my "list" but I managed to get most of my questions answered throughout the exam.

I asked if what she saw on my right hip was atrophy? She said "yes, and that is why I wanted you to return for this follow up visit." She did another clinical exam doing many of the same things she had done before and some things I didn't remember from before. Don't know for sure if she checked for clonus. She didn't notice any big changes. I asked her if the atrophy would show up on the EMG she had performed and she said no....unless it is caused by nerve damage. Her only explanation for the atrophy was possible redistribution of fat tissue due to weight loss. Thing is I have maintained my weight for several months.

I mentioned the runny nose when eating, etc. That is actually on the checklist of symptoms I filled out for the appointment. She said maybe it will get better after winter...not really.

When she was doing the exam I showed her how if I spread my toes out on my left foot my second and third toe wouldn't stay up...they "wilt" and bend under. She asked me to do it on the other foot. On my right foot the pinkie toe wants to pull back in to the toe bedside it. She said I wouldn't worry about it unless you can't spread your toes at all.

I asked her about the shaking when picking things up...heavy or light, when applying makeup, holding fork etc. legs shaking on tiptoes, etc. and if that was a symptom that came before the "fail". She didn't answer me.

The end result of this visit was suggesting I see a psychiatrist. I opted to go to one in my town rather than travel back to the teaching hospital. It took awhile to get in. I have seen him twice and his psychotherapist twice.

The psychiatrist said I have anxiety and depression, but that didn't necessarily mean there was not a physical issue as well. He seemed knowledgeable about neurological things and would know what I was talking about when I would tell him the tests that had been done, symptoms etc. I told him I couldn't really argue with the EMG results and he said that's not necessarily true if your body has not progressed to the point where things would show up. That was a "chink" in the confidence armor, but don't know if he was really referring to ALS. He adjusted my meds. Increased Lexapro and added clonazepam to help me sleep better. The twitching and jerking have lessened a lot since taking that. Still happens some but much less frequently. He believes my next step should be a rheumatologist. Going back to teaching hospital..appointment in July.

Psychotherapist is giving me things to do to help me cope and get me mind around all this. Still too early to tell if all of this is helping, but I'm trying and doing what she asks. The Lexapro seems to help some days, others not so much. It seems better since they have "tweaked" it a bit. But I have thought that before. Seems that no matter whether the depression is from the anxiety etc or from a disease the med should be helping.

My main concerns now are the atrophy in my right hip and the beginnings I can see in my left hip and the pain in those areas and my lower back. I'm also having more problems with my voice now. Altho I seem to stumble on words some , no one seems to notice slurring. But I am hoarse A LOT and clearing my throat, sometimes after eating, sometimes not. Thick saliva etc. I am concerned that the rheumatologist will not find my symptoms fit any of his "categories" either and I'll be back to square one.

I know this is long again but hopefully I have typed it in such a way that it is easier to read. I truly hope I have offended no one. I know those of you with an ALS diagnosis have days much worse than mine and I cannot truly understand. I know I am not really a member of this community but I think of you often and pray for your comfort and peace.

God Bless,
KITT
 
Dear Kitt,

I am coming to you with blinders on because I do not remember you or your posts. Can I ask why you doubt your neuro and want our opinions? He went to school, we just live it. The neuro said NO to ALS and yet your second guessing him. He told you again that the "atrophy" of your hip was not ALS....still you don't agree. So is it that you want us to say you have it? I don't think anyone here will tell you so!

Losing weight causes a shift in your body structure. I know when I lost 60 pounds my body morphed. As for the hoarseness, it could be as simple as your meds. They don't list it because its nothing, but some drugs can dry out the nasal passages or your mouth. Try sucking on some hard candy or chew gum. also, the perceived speech impairment, is just that, PERCEIVED. You would know if you were having Bulbar issues, believe me.

For the toes, please don't become fixated on any one body part. My middle 3 toes curl under in a contracture while the big toe points upwards. And can no longer wear shoes. So let's skip the toes. Runny nose, can't help you. What was the temperature inside your home and was it humid or dry? Remember the meds problem? Could be similar.

As for the shaking when reaching, could just be old fashioned "nerves". Some people get that way when they allow their anxiety levels to rise too far. Also, check your meds.

And finally, keep seeing the psychiatrist/psychologist. Often times it takes a while to "tweak" that medicine . You may also have to try different ones. The mind is a powerful weapon that can be used for or against ourselves.

As for the rheumatologist, don't bother. You have already decided that its going to be a waste of time. So don't waste his.

As for the psychiatrist, it was not his place to say a clean EMG could still mean ALS. That's not his place as well the psychiatrist didn't treat you for a neurological disorder!

I'm sorry you didn't get the response you wanted.

Good Luck to you,
 
Toto,

Thank you for your reply. I know I sound negative and skeptical. I'm sorry. It is not necessarily that I don't believe the neuro. I keep telling myself clean EMG, good clinical exam, no ALS. I just know how long it took many of you to get a diagnosis and how often I see "everyone is different" in how ALS begins and progresses. So as the symptoms continue, the negativity creeps in. I am trying to work on that. I certainly don't expect or want any of you to tell me I have ALS. The pain and atrophy puzzle me and no one seems to know where to point me to help me figure that out. (By that I mean doctors, not PALS). I thought maybe there would be people in the forum who have had symptoms and experiences similar to mine but weren't diagnosed with ALS that might have an idea what to do next.

I have actually thought the meds might be causing some of the voice problems. Thanks for the advice.

I will continue seeing the Psychiatrist. He told me he didn't need to see me again until I saw the Rheumatologist. He doesn't know yet that it won't be until the end of July. I am scheduled to see the psychotherapist every 2 weeks through May.

I will go to see the Rheumatologist. Sorry to sound negative about that. I am truly hoping he has some answers.

Thanks again for taking the time to respond.
Blessings, KITT
 
Kitt,

I think you're going to be sorely disappointed if you expect quick answers from a Rheumatologist just as you were with the Neurologists. You really need to change your mindset away from every little thing that you can think of and attempting to connect them. Instead decide what, of all your peculiarities actually is a problem for you in daily life. Bring that one to the appointment. The rest if relevant should come out through the history led by the Rheumy.

Keep seeing the psych-folks. I think it really helps to have that outlet in place no matter the outcome of the investigations.
 
KITT,

There is really only one short series of questions that needs to be asked and answered. And you are the one that needs to answer them, not your doctors.

  • What progressive disability do you have?
  • Where did your disability start?
  • How has it progressed?
  • How does it affect your day-to-day living?

These massive information dumps that you periodically post give headaches to those of us who would like to help you get pointed the right way. Each of the four questions I've listed above can be answered in a single sentence. I invite you to answer these questions with that single sentence, if for no other reason than clarifying the muddle of information you've already given us.

Beyond helping you sort out the relevant symptoms from the distracting ones, there's not much that anyone here can do to help you. What you have described in your past posts sounds nothing like ALS to us. We need to know why it sounds like ALS to you.

What have you got to lose?
 
Notme,

You apparently misunderstood my response. I said don't bother going because she would be wasting his time because she probably will not heed his advice. She even replied and apologized for being negative about going. I'm all for finding the answers, just that if she is or has gotten the diagnosis, she must have an open mind.
 
I did misunderstand, Toto--sorry bout that, LOL. I tend to speed read--and miss things sometimes.
 
Kitt, I feel for you because I know you're in pain and confused and stressed. I'm so glad you're getting psych help. Please see the Rheumy, but don't expect a quick answer there. Don't give up if it takes time and they want to try different meds. The doc couldn't tell from my bloodwork, x-rays, etc. exactly what kind of arthritis I have, but she said 'there's lots they don't know' (should be the disclaimer for honest intelligent doctors, imo). Even on meds, I sometimes have pain, weakness, and trembling at times. Most importantly, there is no progression. It comes and goes and is sometimes worse than other times. I do not have ALS.

Any medical professional worth his malpractice insurance will state, "I can't rule out..." when discussing something that they haven't personally diagnosed. It doesn't mean a thing.

Good luck finding something to make you feel better.
 
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