Solu-Medrol once a month for 6 months

[DeeLasVegas74]

I have been sick for over 18 months with "MS Type Symptoms". I have numbness, tingling, burning, hyper-reflexes, fatigue, balance problems (can't walk foot over foot in a straight line without falling over) and most recently I developed a cold feeling like someone is putting ice on my finger and then that feeling moved to my hips and my spine. I also have a new symptom that is bone aching (and has to be the worst symptom of all). In addition, I have a hard time with muscle stiffness at times as well as cognitive slow downs where I can't think of the word for something. I have a hard time typing on my Blackberry at times due to my symptoms.

My doctor just started me on IV treatments of Solu-Medrol once a month with a nurse at my home. My question is: Does Solu-Medrol cause bone aching to be worse and what do you find can ease this awful symptom?

All of my MRI's have shown only tiny lesions that are in my subcortical white matter and my doctor has attributed those to my migraines that I suffered in my mid-twenties. I am now 38 years old. But my doc does beleive that I am presenting with "clinical MS". My spinal tap and other MS tests have come back negative as well but I am not getting any better and my symptoms are getting worse and so are the exacerbations.

Thanks for any help you can lend me! Much appreciated. :)  

[sennefer]

Hi,

How are you today?  This is a question about selecting your doctor.  I am a Vet who goes to the VA Hospital.   The symptoms you have I have been experiencing it for eight years now.  

How is that you get a pre diagnosis with the same presenting symptoms but I am being told that my condition is undeterminable.  But, I am on steroids, baclofen, tizinadine, gabapentin, and anything to treat my symptoms if proven necessary.  They have conduct diagnostic studies like mri, ncv, and others.  MRI results are presented wtih lesion about 12.  The nerve conduction study shows inflammation on the optic chiasm, and eye nerves.  The conclusion of study was abnormally biltaterally prolonged p100s.  

The eye doctor states that I have had numerous uvietis and optic neuritis exasabations.  At one point, I even had blindness in my right eye.  that lasted for two and  a half weeks.  And, has been diagnosed with optic neuritis and uveitis.

My symptoms (neurologically) have been fatigue, spasms, spacity, weak right side, trembles, extreme jerks in knees and arms.  Fogged mind, and have sharp spacitic symptoms in hands and legs to feet.  

I do have migraines.  And, I am diagnosed with vertigo and meniere's disease.  But, these doctors are saying we are looking for disease which mimicks MS only.  How did you get them to at least clinically diagnose you?

[DeeLasVegas74]

I have not been diagnosed with MS diagnostically, my doctor has said that he has ruled everything else out (no lyme disease, no arsenic poisening, no lead poisening, no lupus, no fibromyaligia, no Lou Gehrig's, nothing else. In his opinion, I have MS and ince it has done enough damage, it will show up on an MRI. As of right now he is calling it Possible MS or Clinical MS.

Solu-Medrol has not been that bad (only the first month) when I had to have 3 doses in a row but every month after that, it has only been one dose. It helped my coldness symptom that would go down my spine and be in my hands and I'm not as tired as I was before.

I cannot be on MS medication because my insurance won't pay for those drugs until they can see MS on an MRI. I have had spinal taps and every MS test you can imagine but they all come back normal. My doctor said that he has had patients just like me that present with MS and have no lesions until up to 5 years after the onset of the symptoms. And other patients he has seen will have tons of lesions on an MRI and have no symptoms at all. This is a strange disease.

My bone pain is nerve related according to my doctor. When the central nervous system is being attacked by your immune system, bone pain can be one of the many 60+ symptoms that MS can cause. I also think that my bone pain is related to the sinus infections that I get about 3 to 4 times a year. Anytime an infection presents in a person with MS, an exaccerbation can be set off that causes new symptoms and old ones to flare up.

[anon07072023]

Have you been diagnosed then with definitive MS?  IVSM once a month can be a lot to go thru.  I get bad reactions from IVSM.  I feel like I've been beat-up with a baseball bat.  I'm not sure what could lessen the symptoms.  My neuro had said before that she didn't know if she would allow me to take it again because of my hypersensitivity to it (plus it doesn't really work for me anyway).  

Are you taking any prescription meds for your ms-like symptoms?  And have you discussed starting to take one of the disease modifying drugs for MS (ie Copaxone, Tysabri, Gilenya, etc)?  

I was wondering if your neuro is associating your bone pain to your MS?  

Good luck with everything.
-Kelly