Drygirl, I am ever hopeful for you! I hope that they can give you some solid answers and effective solutions very soon! Sending my best, SK
drygirl said:
Iv'e been going thru similar things for a month: I shake inner core and my hands and legs terribly. My skin tingles/burn on cheeks, legs, arms. It is also affecting my heart rate and BP with weakness, bladder,and brain fog. This comes and goes and is getting worse. I am currently seeing Dr. Grader-Beck at John Hopkins and I see a lung dr and kidney dr this week and he is tryig to schedule a EMG soon. I'm hoping he comes up with a solution soon because I want my life back. I am in bed a lot
. This ismy second trip to JH, 8 hour drive. Hopeful, Drygirl Kaz said:
Yes, balance issues. Yes, to the tremors and chills. My whole body sometimes vibrates like I am plugged into an electrical socket - shakes internally. Other times shakes externally. At the moment on my left hand I have two fingers that move about while the others all stay still. I also get the chills, but with mine my body temp actually drops to between 34 and 34.5. My MS neuro said he thinks my hypothalamus is affected now. I also get massive areas on my body that burn like ice burn and are just as cold. All other sections of my body will be warm as toast. The central nervous system is incredible!!
Have you been treated for these symptoms? What was the treatments? Have them been successful? I am desperate, Drygirl
Kaz said:
In regards to aura and no headaches. This is called a silent migraine - Acephalgic migraines. Also eyes shaking is called nystagmus. They can shake side to side or up and down. These are all neurological issues that can be part of any autoimmune disease that affects the central nervous system. I suffer from both silent migraines (also poudning migraines) and nystagmus. I have nystagmus from MS and also my rare inner ear condition.
HOWEVER, nystagmus can be acquired through different medications and can migraines - Dilantin is one medication that causes some huge issues.
Other considerations are B12 deficiency can also cause these symptoms. So if you do not take B12, ask your GP to test your levels and start taking supplements for this and see if it improves as B12 can cause some horrific central nervous system issues and often can mimic MS and other conditions.
Other things that can cause this is Meniere's or labrynthitis.
What you need to do is have full testing - audiology and balance testing to begin with and ensure you have all the ENG tests. That is the first place to start besides an MRI of the brain.
Also ask them to look at your pineal gland. Cysts in this area (usually benign) can also cause many issues.
Thank you, very informative. You don't happen to live in NC do you? Drygirl
Kaz said:
Go and get your B12 checked first as a matter of urgency so you can see what your baseline is. Then buy yourself some B12 supplements and begin to take these while you wait for your results. That is the very first thing that is veery simple to do. Many people with sutoimmune diseases are B12 deficient or will experience this during the course of their disease either in flare ups or as the disease progresses. B12 deficiency causes absolute HAVOC with the body!!
Also at the same time ask for your vitamin D levels to be checked, blood calcium and also magnesium. Low levels of vitamin D also cause issues in the immune system. If you get these checked and let me know your B12 and vitamin D levels I can help you determine whether you need more supplements, and with vitamin D how much.
If these tests are normal, although for autoimmune diseases we need to be in the upper normal levels, not borderline low, then you can explore low dose anti depressants to settle the migraines down. Things like lose dose Endep (usually around 10mg) or Topamax low dose are most common ones to try. However, these will not be effective if vitamin B12 is your issue... So please get that check ASAP plus vitamin D, blood calcium and magnesium.
So that is what I would do first as these blood tests are quite quick for results and if you are deficient in B12 will probably need injections. This is not uncommon for people with autoimmune diseases. Often a person will think their disease is flaring or a new attack and it is just their B12.
If these are normal, ensure you get your GP to order full audiology and balance tests and get those done as quickly as you can, as best to start any meds after these tests as you want true readings as a baseline. Then discuss starting low dose antidepressants. These can take 4-6 weeks to really kick in and also to get used to any side effects but your GP can discuss that with you - the risks versus benefits.
Also arrange that MRI to check for any inflammation in the brain, and/or lesions (plaques) and also ask your specialist to check your pineal gland. That is the approach I would take. Get the bloods tested first and also include a full blood count to see if you have any abnormalities there, and also get your CRP, CK, ESR to check for inflammation in your body. Organise the full audiology, including VEMP testing and ENG's and see what they demonstrate. All these can occur while you wait for your MRI appointment.
Try not to panic as this can exacerbate things. Write down a list and tick these off as you go so you can see you are making progress to sort this issue out. Also migraines can come in what is called clusters where they last for days, weeks or sometimes longer. Ensure you also eliminate things like soft drinks, coffee, tea, spicy foods, MSG, salt etc., from your diet as these can exacerbate migraines.
I have attached something for you to read. There also are some good books to read. You might be able to get them from your library.
Migraine,by Oliver Sacks MD
Heal your Headache the 1-2-3 Program by David Buchholz, MD. This deals with diets etc.
What meds do you take for the various problems and do they help to make you feel better, actually get out of bed ad function on a somewhat normal level? I did have the b12 test and it was low and I am taking it now. Lost the tests results when a doctor at JH keep them by mistake. Thanks so very much for all your valuable input. Drygirl
The DX is sjogrens with the dry mouth, eyes, ect, as well as the CNS, as I already knew. Now the doctor says sjogrens is very tricky to treat but highly recommends me to move ahead with the rutuximab infusions. That is my next step. I may not like the whole DX and what I have, but at least I have steps to move forward in a positive way. I will keep everyone posted on this thread, as I move along. I still have yet to read all the wonderful information in this thread, provided by all.
I wanted to thank everyone for the help in this journey.
Kaz Thank You and yes you are so right its finally good to have an answer.
I saw your post to Dry eyes and I also eat well and take lots of vitamins per a nutritionist who worked with me on diet and vitamins. I feel so much better just changing my diet. I do not exercise, but at work I do a lot of walking around. I make a point of not sitting at my desk all day. I also clean my house on the weekend and I get a lot of exercise from that and I walk the mall on the weekend....its warm and safe to walk.
I noticed a lot of people with CNS issues have vitamin B-12 low levels. I did too. Now I take a supplement for that and it helps with the fatique