There is a huge problem with diagnosis with comorbid conditions. As in all this overlap of symptoms. I really need to find answers but answers are incredibly hard to find now. I wonder if it isn’t anything New at all bur rather something that has been ignored for too long.
I have:
- Chronic migraine
- Chronic vertigo
- Fibromyalgia
- Hypothyroidism
- Mild arthritis
- Asthma
- hEDS- What was called Joint Hypermobility Syndrome when I was diagnosed at 16. And is now Hypermobile type Ehlers-Danlos syndrome.
Multiple Sclerosis
Okay, so I have had more than a few MRIs in my day due to chronic migraines being weird and then all of a sudden they started to show demyelinating lesions. And possible MS. But I have been seeing that neurologist for a long time and he doesn’t think I have MS. And I wonder as well. But I have been having issues walking, with stiffness, with numbness.
Of particular concern are:
- I developed drop foot
- My entire arm went numb. Couldn’t feel it or move it for hours. The first time it did it, it wasn’t as bad. It is the right arm which is also the side where I have numbness in my hand.
I definitely have some serious heat intolerance which leads to some serious walking issues and also makes the drop foot worse. My right hand is now always numb, but like wearing a glove numb and slow moving (loss of dexterity). I wake up in the morning and often part or all of my left leg is numb. I get constant tingling in my legs and feet.
I also have insane fatigue and pain but with FM that is overlap there.
So my neurologist is going to get me a lumbar puncture to rule out MS. Which is the most logical thing for him to do. I agree, and once he does… what then? What is causing all this weirdness? It may be slow RRMS. I have no new lesions at this point so that is good. Or… what?
It could be anything or it could be something I have already that doctors have long, long ignored for lack of knowledge… hEDS.
Hypermobile type Ehlers-Danlos syndrome
Once I was diagnosed at 16, I was told it was the cause of a lot of my pain and then it was promptly ignored for the rest of my life. It has caused a lot of injuries. And I have been told by physio therapists a lot that I am doing things wrong and hyper-extending a lot. The neck in particular is one mentioned frequently since I kept doing those exercises wrong. Who knew? I didn’t.
Most things I have are comorbid with hEDS. And it shares a lot of symptoms with existing conditions that I have. The FM overlap in symptoms for example is likely what led to it being ignored in the first place. Despite my age and the stiffening that occurs as your body tries to protect your hypermobile joints and the increase in pain, I am still pretty hypermobile. I still score as hypermobile on the Beighton Score (6/9 elbows, knees, thumbs) despite some joints that are now too stiff to do what they used to (pinkie used to do the 90 degrees but now they hurt like a mothertrucker when I do that and I never could do the touch the floor one, close, but nope)- then there is the historical questions, which obviously, yes, they used to. But other areas like my neck are still quite unstable. Some areas never change.
Mostly I am concerned with the entrapment and peripheral neuropathies of hEDS.
Such as may cause foot drop:
Foot drop can be caused by nerve issues in the knee or the back, and not by MS. No one has looked into this for me. Although I am going to have to mention it soon I think.
I found this case report (A bit too old but I am curious if there is more recent occurrences to suggest others have had drop foot complications):
We report a patient with type III Ehlers-Danlos syndrome, presenting with recurrent footdrop, who had electrophysiologic evidence of a conduction block of the common peroneal nerve followed by complete resolution. We feel that this case supports the possible link between Ehlers-Danlos syndrome and multiple pressure sensitive neuropathy (tomaculous neuropathy), alluded to by Schady and Ochoa (1984).
Recurrent common peroneal palsy in association with the Ehlers-Danlos syndrome. A case report
But also I developed foot drop while in physio for my vestibular symptoms so I was doing a lot of exercises unfamiliar to me. And I definitely was told I was hyper-extending once (my neck) so it isn’t much of a leap to think I injured something- like when I did something very similar to my back doing yoga and caused an injury that lasted a year. Like that time. I have a problem with exercise because I can’t tell how I am supposed to move.
Numbness and dizziness
People with hEDS may have neck pain, difficulty walking, numbness and tingling of the hands and feet, dizziness, swallowing difficulties, and changes in speech. These people are more likely to have signs of looseness or instability around the head and neck. In many cases, these symptoms are not entirely attributable to head and neck dysfunction: symptoms may still persist after successful surgery.
Abnormal spine curvature is common in people with hEDS, in a large part due to a combination of structural and functional abnormalities in the supporting tissues of the spine. Conservative management will ideally allow avoidance of surgery.
I do have a small curve in my spine. It isn’t a big deal in my case. But neck instability likely is a factor. Neck pain and migraines and dizziness and vertigo and numbness… yeah. But also walking issues now- maybe because I am older. And definitely stiffness and more pain now that I am older.
I don’t know if it could cause my entire arm to go numb like it did but I do think it could be causing the drop foot, the numbness in my leg when I wake up, the permanent numbness in my hand, the tingling, the pain, the dizziness, the vertigo… and so on.
But it is just an alternative theory. And one I can’t prove because I literally do not have anyone managing this. And likely never will. I was diagnosed with it and then it was just– ignored forever. And I can’t figure out how to manage it myself because all attempts to exercise myself have caused some serious issues or a lot of pain- so I keep my exercises simple these days.
Anyway, I wonder if I am right. In which case- I May be able to do something about the drop foot because it would I think be able to be detected and treated, especially after they rule out MS. Or it is MS. I have no idea. When it comes to numbness and weakness and so forth so many things could be diagnosed with those symptoms. But certainly no one considered hEDS as being the cause- something I already have. It doesn’t explain the lesions but lesions do not equal MS apparently. It is the best alternative theory I have. And not a damn thing I can do about it if I am right. Maybe print the info out and give it to my doctor just for reference. I think I will find a physio place that knows about this sort of thing and start there because maybe I can work on some of the instability that is causing some of the specific issues.
Assuming I am right. Damn it all. Too many comorbid issues. All I know, is my neurologist who has treated many, many, many MS patients does not think I have MS. And I don’t think I am progressing like MS either but I definitely have some problems that are not accounted for by FM. I can’t think of anything other than MS that would explain all this unless it is hEDS- but I don’t know enough about that either to know if it would cause the severity of the things I have going on either.
Chronically Nikki 
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