Tremors, difficulty with speech and walking, head shakes! Auto immune disease?

Hello @Sirrah sending you a private message

Hi Kath, I had Guillain Barre Syndrome and although it was many years ago, I still have residual in my face.  My GP says therefore my body has already shown that it is susceptible to going into auto immune response.  Yes, I agree that the medical profession don't seem to take into account those of us who have or have had auto immune syndromes. My oncologist dismissed it when I brought it up prior to chemo, and has since rejected auto immune issues in diagnosing my current Parkinsonism. I have just been admitted to hospital due to shortness of breath, causing my speech to be even more effected than it has been for the last 4 wks. of course they had to try to rule out a clot or heart issues,,but when that was done they just referred me back to the neurologist (from the same hospital) next week. I have seen him for 4 sessions of at least 1/2 day in last 2 wks and Imappreciate he is trying to eliminate diseases/issues but I am losing hope that I will get a diagnosis before I have to make a decision about continuing chemo next week. (I have already missed my 3rd session). 

May I ask what your originial auto immune illness was/is?

I have Graves disease (auto-immune overactive thyroid) that reappeared with my breast cancer diagnosis (3rd time Graves)  but prior chemo starting.

During my second round of treatment of taxol I had a mild allergic reaction so I needed higher steroid doses. Even though it was only  one day per week on the steroids I developed rapid weight gain, moon face and a fat hump on my back. All resolved once chemo finished. The taxol chemo ...which is obviously a different regime than yours impacted on my balance, gave me terrible pain and slowed my walking down where it felt like walking in wet cement. Fortunately all gone now. 

I am wondering though if your thyroid function has been checked? An over active thyroid can cause shakes throughout your entire body as well as a hand tremor and makes your legs feel weak. Throw some steroids on that and you are in overdrive. Sometimes its just an awful timing coincidence but it could be tested quickly and be outruled. Unfortunately us people with autoimmune illnesses can develop another. Worth checking  or discussing with a Dr. Sometimes because of being under cancer treatment they forget the basic stuff. Kath x

Thanks arpie, Brenda5, Zoffiel. Have been in constant contact with Oncologist, GP, Surgeon since mild tremor started in cycle 1, and Neurologist for over 2 weeks now. Lots of tests - CAT & MRI scans and lumbar puncture but just eliminating things so far, not finding cause!  Tests again today!
conflicting advice is not helping me make a decision re continuing chemo as Oncologist wants. Other Drs not so sure that I should continue, my decision!  Going for second oncology opinion next week. I don't want to jeopardise cancer treatment but definitely do NOT want to end up in a hospital bed, being turned by nurses for months, then sent home to recover for years, with no help but my family, as happened previously!

It may be that the effect of two doses has already done all it's going to do in terms of side effects. I would get the other two (if that is your regime) done but have the head of oncology follow up in between doses just to make sure its going well. It can take ages to drop all the side effects from chemo.

Gosh, @Sirrah - can you call you Onc?  That sounds like you need to speak to the top guy about this, urgently!

Is there something else you can use instead of the dexmethesone for the nausea?  You may be allergic to it?   But check with your Medical team first before you stop taking it!!

All the best ......