Hi Julie,

I am no expert, but I was diagnosed with neurological problems BEFORE I was diagnosed with MCAD.  They did an EEG after several days in the hospital (for what I now  understand was a anaphylactic reaction). It was abnormal.  Because I had no idea about the mast cell issues at that point, they put me on Keppra (a seizure drug).  No one knows why, but it has helped my symptoms of dizziness and headaches a lot.

When I saw Dr. Afrin and he talked to me about my diagnosis of a "possible seizure disorder".  He felt that it was a degranulation episode that was causing the headaches, blurred vision and pain and even possibly the abnormal EEG..  He felt getting the mast cell disease under control would help with the other symptoms.

 Also, some of us with Orthostatic problems can have a narrower channel in our neck area that can cause pain and even decreased blood flow to our brain.  I find when this type of combination of pain occurs as well as the visual problems, I seek out a physical therapist.  My PT has taught me the use of "pressure points" that calm damaged nerve endings. You identify those "trigger" areas and apply pressure which relaxes the nerve endings, and thus reduces the pain to the tissue around it.   It controls much of my pain without meds... I would not try this without the advice of a therapist knowledgeable in this.  Otherwise you can cause more pain than what you would otherwise relieve.

Are you on cromolyn?  (I have to admit that the cromolyn seems to aggravate my dizziness but if I drink it in small amounts then I don't have any problems). HOWEVER, it has been the cromolyn that has reduced my bone pain to almost zero (I only experience nasty bone pain now with a major degraulation)!!  So it is worth it to me. Do YOU feel you are adequately medicated?  Are you really careful with your diet as well?  If I eat anything I shouldn't, the first symptom I experience is that awful dizziness!

I agree with Joan....a vitamin investigation is definitely warranted.  I am glad to hear your doctor has started investigating this.

I also think Ramona made an excellent point....until those histamine levels come down, nothing can stop the kind of pain we experience.  It's interesting that you mentioned a 6 hour dosing instead of 12.  I am finding that when I dose more often it is much more effective.  I always remember from chemo...they would always tell you "it's better to KEEP the pain under control than try to GET it under control"  We tend NOT to medicate until we feel the pain instead of keeping ourselves on a regiment to AVOID the pain.  Be good to yourself!

Keep us posted Julie and I wish you the best!

Hugs, Lynda

I had so many neuro problems at the beginning of this disease one of my first symptoms were tremors in my hands and then it developed in my feet horrible when I was trying too drive and very scarey, I also had involuntary jerking at night when I would try too go too sleep, I also had severe tremors in my head like my whole head was shaking now I rarely have any of these symptoms anymore, my only lasting symptom seems too be neuropathy in my feet not dx by an MD but by me I cannot go barefoot in my house on my tile I just feel so funny like I will lose my balance and I have no feeling in my feet I always have too have shoes on my feet unless I am upstairs on my carpet floor or in bed. I had a neurologist dx me PID when I was in my early stages of this disease he insisted I should go on IVIG wow I wonder what would have happened too my mast cell problem if I had listened to him and had a million peoples antibiodies crusing though my body wow can't even imagine I think your neurological symptoms should be checked out if all comes back neg it probl from the mast cells and will get better

goldielove wrote on 04/06/12 at 13:16:28:



Goldie, I don't think you are understanding how IVIG treatment could indeed have helped you.  I'm not sure if you are understanding the processes correctly.  Although it is not widely spoken about, I have heard that some of us who are autoimmune masto patients have indeed BENEFITTED from IVIG treatment.  It's a valid option.   I would most certainly try it if one of my doctors would only suggest it, for I think that it would give me some real help, but since my symptoms have calmed down a bit by introducing singulair, we're not feeling such pressure to trya the IVIG treatment.   But I can't help but think that it may indeed be a good idea because my autoimmune side of this disease has a real, define role in my masto and my recent upper and lower GI has shown that the inflammation has increased since 2008!   My esophagus was totally clear of inflammation then and now it's half way up the esophagus!!!  My intestines show increased inflammation.    If it continues in this way, I will be asking for this treatment for this is not a good sign.


Lisa

Wendy:
Yes I had 2 of them. The first when it was only my feet & they tested
just my legs. Not bad. 2nd one I was full systemic with my skin so
sensitive it hurt to touch much less put electricity through. When they
did on my arms which are now as close to sensitive as my my feet I almost blacked out the pain was so bad. I'm not sure how a shocker
would react, all I know is no pain I now have anywhere approaches the pain I had during that test. At one point the doc asked me if I wanted to stop & I said no, if it helps me find out what is wrong with me keep going with the test unless I black out, but I didn't. But test just came back with something was interfering with my nerves but
was not a neuro problem & I kept on my search from there.
MikeV