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Author Topic: Myelitis, dystonia, myoclonus, tremors  (Read 2742 times)

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Offline zach

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Myelitis, dystonia, myoclonus, tremors
« on: March 15, 2022, 11:21:37 am »
Starting this thread as a way of keeping notes and organizing my thoughts, next Dr appt I'm going to revisit these issues with him. Haven't seen him since before cancer surgery and radiation treatments. COVID had us touching base by email just keeping HIV meds up to date.

2014 acute episode of transverse myelitis. At the time WBC was too low for steroid or plasma treatment that was recommended, and told their window of effectiveness had passed by the time I was healthier.

Over time some of the after effects of that have faded, others have lingered and progressed.

Shooting pains and myoclonus jerks, followed by tremors, weakness/fatigue in my legs, a wave of exhaustion and labored breathing afterwards. Heat helps, when I'm cold  it's worse

Dystonia, sometimes pretty bad. Rigid contortions, not cramping, but locking up and slow to relax.

Balance/vertigo... feeling like my hands and feet are a few inches away from where I think they are, do something clumsy and suddenly feel a wave of vertigo as I zero in.

Gait hasn't been normal since, can't run due to loss of coordination.

I walk like I'm a little drunk, standing still I'll stagger and lose balance sometimes

Gabapentin and B12 for a couple years, may need to resume that.

That's the biggest strokes, will fill in more later.

Offline lightalltheway

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Re: Myelitis, dystonia, myoclonus, tremors
« Reply #1 on: March 15, 2022, 02:36:27 pm »
I am sorry that you have to undergo all of this. How do you feel? please always remember that you are not alone.


Offline Tonny2

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Re: Myelitis, dystonia, myoclonus, tremors
« Reply #2 on: March 15, 2022, 03:11:57 pm »

          ojo.              Hello Zack, I’m really sorry for what you’re going through. Is all these issues relate to hiv or the meds?…I hope you get better, we are here for you…keep yourself strong!!…hugs

Offline J.R.E.

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  • Posts: 8,195
  • Positive since 1985, joined forums 12/03
Re: Myelitis, dystonia, myoclonus, tremors
« Reply #3 on: March 17, 2022, 03:31:03 pm »

Sorry you have so much on your plate right now. Hopefully you will get some answers soon.

Take care if yourself ---Ray

Current Meds ; Viramune / Epzicom , Eliquis, Diltiazem. Pravastatin 40mg UPDATED 4/26/23
 Tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of April 18th 2023, Viral load Undetectable. <20 (HIV log Copies <1.30)

CD 4 @661 /  CD4 % @ 18 %
Lymphocytes,absolute-3623 (within range)

CD8 Absolute- 2118 (H)
CD8 percentage-58 (H)
CD4/CD8 Ratio-0.37 (L)


Offline zach

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Re: Myelitis, dystonia, myoclonus, tremors
« Reply #4 on: March 18, 2022, 04:15:54 pm »
Nah y'all, it's not really like all that.

I'm living well, I've been doing good for awhile.

This is sort low level constant aggravation.

I just think it c/should and can be more effectively treated than it was. The more I've learned, the more I wish I had pushed at the time for steroids

I'll never be the 20 year old I was, time does that just as much as anything HIV has ever thrown at me



Offline beauraingdance

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  • Posts: 11
Re: Myelitis, dystonia, myoclonus, tremors
« Reply #5 on: September 08, 2022, 10:37:00 pm »
Hi ,I take Gabapentin 300 MG 3 times a day, when I do not take it it is not good, They ruled out Parkinsons, but yes, I have all the symptom you mentioned, I have a very athletic profession, that I have had to adjust especially from neuropathy, When I am not active things get much worth, the lack of energy  or minor depression makes me very sedentary.
I am 58 years old and my 84 year old mother has a lot of the same symptoms. all of this  started after my hospitalization for Aids. sometimes I get tired of trying to manage constantly and let myself go and I become a very old man, I know I have to keep fighting it. My neurologist says  nerves take a very long time to heal ( years) but there is hope for the future. Warmly, Zoltan


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