Puzzeled...

[Krfbmk]

Hey Folks,

I have a serious situation going on here, and I am hoping that some advice on here can maybe ease my mind, and or help with some answers..

I've been going on about a year and a half of having some horrible symptoms, I'm soon to be 39. This started around mid 37..

It started with sore joints, mostly elbow, and then crampy hands
(Sometimes dropping things) , then switched unbelievably sore hip joints.. Slowly I started having low back pain followed by a tightness in the neck and shoulders. I basically woke up one morning and was never the same. I had/have this unsteadiness that I can never shake. Obviously I have been through some serious testing, and when I first approached the hospital with my concern they chalked it up to Vertigo.. After further testing it was said that vertigo was not my problem. I'm unsteady, never dizzy. It seems as though the weakness comes from my hips or ankles

After numerous MRI's of the head, thoracic, and lumbar
(With SI and tailbone) nothing was really found. Minor wear and tear
(C6-c7 mild disc herniation), degenerative changes in thoracic spine, and as L5/SI minor disc bulge too. My family doc said that this is actually quite common, and there is no chance that can be causing my issue.

Things get a little weirder here.. Then I get sent to my neuro, and he does basic random tests, said that it could be something but if it is something, it might just be in early stages, and that it could also just be stress. I told the neuro respectively that I don't do drugs and drink, and know my body well enough to know that something is wrong. He told me to come back in 6 months. I've tried numerous different therapies too.. Chiropractic care, acupuncture, massage therapy. Chiro gets rid of the unsteady for a day or two but then it comes back. Then came the fatigue, blood pressure problems, memory fog, wickedly sore neck, to the point where I can't even sleep for longer than 2 hours, and this pain radiates to my traps, down that back of my arm all the way to my forearm (left side). Then the scariest of them all was the full body twitching, and my face. I mean when the face twitching began, I feel as though this is the tell tale sign of something more sinister. Left eye twitching that comes and goes, facial twitches, and even my tongue, sometimes the facial twitches are provoked by turning my neck a certain way.. I still have strength in my body, but I kid you not my legs seem smaller with my muscles (like skinny legs)..

I also got a nerve conduction test over a year ago, and at one point they thought it was stiff man syndrome, but the test for that came back clean. The nerve test was done, but they did the wrong side, they did the right side, but most of my problems stem on the left. So once again left without answers. As I am chugging along here, I am also having to get a lot of root canals too, which is very odd because I take care of my teeth.. Then a few months later after a battery of blood test my fam doc calls me in and says that I tested positive for CSD (cat scratch disease) or that I have the bacteria, they said that I tested negative for lyme, but if I have it, I'm sure it would be in its late stages anyway.. Went to go and see an Infectious disease doc, and he said that the disease is self limiting and that it in no way can be causing my symptoms, I pleaded with him to be put on antibiotics, and he just gave me a 2 weeks supply and sent me on my way, during that 2 weeks, I had a crazy reaction and had some neurological stuff happening, pins and needles on my face, numb lips, and extremely sore jaw. After a follow up he said that it was out of my system, but depending on what and where you read (Bartonella) is never truly gone.

Anyway, I now have a birthday coming up, but its hard to get excited because I know I'm not well, and it feels as though my body is attacking itself, and if I let it, it immobilizes me and I don't have the energy to leave my house. The constant unsteadiness wears me out, and its hard to even think about standing in front of a stove and cook. I'm perplexed with the full body twitches, joint pain, facial twitches, and lack of sleep. I'm terrified that this could be the start of ALS. I'm very familiar with this disease as I've done plenty of charity work for the cause, and never even thought that this could be a possibility until that facial twitches hit.

I guess one of my biggest question is, how long does ALS usually take to present itself? Should I push for a lumbar puncture? A nerve or muscle biopsy? I'm sorry for the novel folks, believe my I watered it down much more than I wanted to, and I don't wish to bore anyone too much. Obviously I know nobody can give me medical advice, but I figured I'd ask for some support if any of you will indulge me. I turning 39 but I feel as though I 60, and I'm not exaggerating. Its like my body is in a constant state of immflamation. Even as I sit and type to guys and girls now, I have twitches in both legs, and earlier today sharp stabbing pops in my fingers and toes..

Any help would be greatly appreciated..

 

[ShiftKicker]

It's perfectly reasonable to continue pushing to find reasons for your symptoms. I think the issue here is that you are focused on ALS when there are many things that can cause a variety of your symptoms. I know it can be hard in Canada to seek second opinions or visit multiple specialists in the same specialty, but it looks like you need to continue advocating for yourself. Again, the focus on ALS may be muddying the waters, as your doctors are likely spending time reassuring you it is NOT ALS and are not spending time explaining to you what it could be.

I also recommend you request your family doctor to send you to a psychiatrist. Not a counselor or a psychologist- a psychiatrist. A psychiatrist is a medical doctor with a psychiatric specialty. Not because I am dismissing your physical issues, but because you need someone who can walk through your concerns and symptoms with you and provide support in what must be a very stressful time for you. Even better than just a "plain old" psychiatrist, I recommend one that specializes in somatoform disorders and/or complex and chronic disease counseling and care coordination. The reason I recommend this is to make sure your legitimate anxiety is not affecting your physical symptoms and muddying the waters with regards to what might be the issue. Also, a psychiatrist can help reduce your anxiety to allow you continue to function day to day as you continue to search for answers about your physical symptoms.

So, again, the folks here are unable to provide you help with sorting out your symptoms- it is simply not possible because we are not medical experts AND are unable to conduct a physical exam (and we are not doctors). Your issues are complex and long term. While it may feel useful to you to be here, there's not much the people here can do with regards to helping you with diagnosis. While it may feel exhausting, you simply must continue to go back to your doctor to advocate for yourself and seek answers.

Having your doctor refer you to a psychiatrist can only help. My personal experience with a truly experienced psychiatrist with a specialty in somatoform disorders was and still is, a complete life saver. He coordinates my care, refers me to specialists if needed and provides me support when I am struggling. My most treasured possession was a "Dear Colleagues" letter he wrote for me to hand to any new doctor telling them I wasn't a nut and that my symptoms were not psychological. Please find one who can advocate for you.

Best wishes in your continued search for care and answers.

 

[lgelb]

I don't see any ALS in this pic, and, as you know, an EMG on the "wrong side" would still show nerve dysfunction if it existed. If I had all that you describe, I'd find an internist with more of a diagnostic subspecialty. Meanwhile, I would forget about chiro and get a massage from a qualified MT with a neuromuscular subspecialty, swim/hot tub/stretch/walk and definitely get out of the house no matter how short a walk you do. This stuff feeds on itself. And I would also deal with the psychological side of things as ShiftKicker describes.

Best,
Laurie