dennisl27 (@dennisl27)

Hi, and thank you for the response. No, I have not had any cortisone shots, nor any joint pain. As a matter of fact that is one of the confusing symptoms to my doctors. I have the exact amount of extreme weakness in all 4 limbs (both proximally and digitally), but still have reflexes in all 4 limbs. I was told that this is unlike any neurological disorder that he has seen.I’m not sure if the calcium score has anything to do with any of this but if it is maybe it could assist the physicians with making a diagnosis?

First off, thank you so much for getting this information to me and introducing me to this group!As I mentioned my Coronary calcium score is 2240. I had a heart Cath done to clear me for abdominal surgery, which I was cleared for after the heart cath.  I am statin intolerant so I cannot take any statins so I watch what I eat very closely. My BP runs in the 160’s –  170’s over 100 – 115 and am on both Metropolol and norvasc. If there is any information that I can discuss with my doctors that would be great. I have several other symptoms going on right now, too. Especially my neuromuscular ones that they have failed to diagnose, but has left me in a wheelchair, an unintentional weight loss of 80llbs in the past 5 mos and tremendous muscle weakness, atrophy and fatigue. I do not know if there is any correlation between the 2 (heart disease and the neurological one)? But if someone has a similar situation and can pass that along I would be very appreciative. Kind regards 

VonThank you sir!!Your thoughts and very kind words are truly appreciated!Best regards 

Good afternoon everyone I have been dealing with my diagnosis for well over a year now. My symptoms have included the stomach/abdomen issues (as everyone else has had. As well all rapidly increasing weakness in all 4 limbs, muscle atrophy, loss of appetite, tremendous fatigue, loss of 85lbs in 5 months, GERD and stomach gurgling (among many others). And am now in a wheelchair and bedridden. To make a long story short I have seen every specialist that my PCP has suggested but no one can seem to completely understand my disease, what the diagnosis is, or much less stop this rapid progression. Today I was not accepted at the Mayo Clinic for an appointment (much less an examination) and wondered if anyone else had any advice or a similar situation?Any advice would be greatly appreciated and we are willing to go anywhere we have to for medical attention to these symptoms and hopefully a treatment plan. Thank youdennisl27 

Hi Bill
Yea, our symptoms sound very similar. I am on an ASV machine for my central sleep apnea. It seems to be working for me. What are you using for your central sleep apnea? I get the results back from my electromyography this Friday to see what’s causing the pain and swelling in my legs? If it is indeed related to my lower back pain I have injections this Friday called Medial branch block injections. This is very frustrating because I used to be on my feet like 10-12 hours a day at work, now I have to use a motorized cart just to get around at the drugstore or grocery store. But like you said things could be worse. I had to file for Social security disability and should hopefully hear back from them soon. It’s humbling to be in this condition without any answers but we are trying. Prayers and a positive attitude get us thru each day and our motto is “the 2 days we won’t worry about are yesterday and tomorrow”.
I hope you continue to do well!
Best wishes to you!
Dennis

Hi Von,
It is always so good to hear from you and I hope that you are doing good as well. I passed along your well wishes to my wife, she appreciated that. We are on a 3 week chemo therapy for her now, instead of weekly. It’s more of a maintenance dose until her next scans which are scheduled for May 8th. Then they decide next steps, depending on the progression of the cancer, or the lack there of (which is what is in our prayers). My electromyography and NCT (nerve conduction test ) went well yesterday. They basically stick needles in you and send shock signals to the nerve points to see what’s going on with the nerves in my legs and what’s causing the swelling, the pain and fatigue that’s keeping me from walking more than a few steps. I get those results back this Friday when I have a follow up appointment. The follow up appt is to inject my back with medial branch block epidural injections to assist with my lower back pain. I will let you know how it goes, what the results of the electromyography were and how the pain management injections went.
As always, thanks for your support and I’ll talk to you soon.
Dennis

Hi again everyone! Well I had my surgery to remove the abdominal masses and they turned out to be lipomas. They were both benign. I have also been diagnosed with central sleep apnea so I was prescribed an ASV machine which I use every night. My MP is still active. I rarely have any appetite at all. So I force myself to eat. They have taken away several of the meds I was on with the intent of that being the reason for always being tired with heavy limbs, fatigued all of the time with no relief from a good nights sleep. Any advice on these continuing conditions? There are days when even getting out of bed is a chore. It’s getting very frustrating to not get any relief and for the doctors to not be able to get it figured out. I go for an electromyoggraphy and nerve condition test this week. The pain management doctor mentioned peripheral neuropathy or peripheral radiculopathy. The appt is this Tuesday so I will let you know how that turns out. Has anyone had these concerns/symptoms that you are dealing with?

Hi Daniel, Von is right about the fatigue that I have been dealing with. I think we are going thru this, albeit, at different levels. I, for instance, was exactly in your shoes. Doing dishes for 10 minutes (and taking breaks in between) still took all of the energy out of me. I found that prioritizing my chores helped me a lot. And if I can only get them done then I feel I have accomplished something. Like Von also said I have surgery on the 15th. After they remove the abdominal mass and pathology it we will know more and hopefully they will be able to treat it. I will keep you informed.