Can anyone offer me some advice or support? - Multiple Sclerosis Message Board

Michelle127 · 11-16-2008, 12:30 AM

Hello,
I am new to this site and have new posted before. I am writing because I have been having some health issues lately that are really frustrating me.
It started one day while I was at work. The right side of my face and right arm went semi numb and had strange tingling sensations. I went to my doctor right then. My doctor sent me to the er in fear of a stroke. They did a CT scan and said everything was fine and to go back to my dr. if it wasn't gone in a couple days. Well it was gone the next day. A week later it came back. I went to my dr again. He was furious that they just sent me home. He asked me if this had ever happened before, and thinking back the facial numbness had occurred on one other occasion and I have had tingling in my feet also. Things I blew off as being nothing. They happened randomly and at separate times. Now in the last 6 months or so my health has declined greatly. I am always exhausted,foggy headed,occasional numbness/tingling and most recently pain. The pain tends to shift from side to side and my back but mostly ends up on my right hip,knee and elbow. The knee and elbow feel like an arthritis type of pain but the elbow one is shooting sharp stabbing pains that go up and down my arm. The pain can last a few minutes or a few hours. Sometimes the pain isn't that bad, but a couple nights it has kept me up. Once my friend brought me some prescription pain medication to try to help-nothing. It didn't even take the edge off. I tried stuff like Icy hot in case it was arthritis, nothing worked. Also now it seems as though I am always catching a cold. My doctor gave me a flu shot on top of a cold I already had and when I went for blood work the next day I passed out. I feel weak and sick all the time.
I had a MRI with contrast that revealed two very small lesions. The radiologist said that it did not indicate MS. But my Doctor said with everything else that is going on he wouldn't rule it out. I got tested for lyme disease and will find out what the result of that is Monday. In the mean time I do not get to see a neurologist until the end of January. My doctor has said that there is nothing he can really do for me now.
What do I do in the mean time??? I feel horrible. I am single mom who has to go out and work for a living. I barely feel like I can get up to get my daughter ready for school let alone work. I just want to find out whats wrong so that I can get started in some sort of treatment. I guess until then I will have to just deal with it. But it just feels like it's getting worse.
So I am sorry for rambling on......I am just so frustrated. What do you think I should do???

duncan1 · 11-16-2008, 01:45 AM

I'm just north of you and I was infected with Lyme Disease in May of 1990, so it is definitely in the region.

When (what month) did you get sick?

Did you notice any peculiar rashes on your body just before or during the initial onset?

Are you an outdoors type of person? Like gardening? Is there an isolated woodlot or forested area near your home? Do you sometimes get mice in the house in the spring?

Your symptoms mirror my own, when I was getting desperately ill in the Fall of 2004.

I would request a 30 day trial of doxycycline, even if your Lyme test comes back negative as these tests have a 30% false negative rate. If you feel worse after a few days and better after a few weeks, then I would suspect Lyme Disease. I would then request a several month course of doxycycline or minocycline and maybe plaquenil as well. Treating disseminated Lyme can be a very hit and miss affair, and my untreated infection triggered a probable case of dermatomyositis.
Lyme is a disease of exclusion as well, so continue to investigate alternatives and have a complete workup done, but get antibiotic therapy regardless of the test results. There are a number of other tick borne diseases which can occur as co-infections and/or as the primary infection but Doxy is effective against most of them except babesiosis, but this is fairly rare on the west coast, but it does occur.

I just posted a thread called: Minocycline and MS. The beauty of minocycline is that is it highly effective against MS probably due to its anti-inflammatory and neuroprotective properties and it is powerfully effective against Lyme Disease and most co-infections, as well, so either way, MS or Lyme, it should help.

MSJayhawk · 11-16-2008, 07:53 AM

The good news is that you appear to have taken all the right steps whether you knew or not- Kudos to you. The worst case scenario is that you have MS. BUT- life does not end with MS. I went 20 years with MS and no meds before I took disability in 2002. You need not end the life you now have if you have MS. If it is Lyme, you should be right as rain soon with proper treatment.

I do not know what it is to raise a child as a single parent, but I can empathize with your feelings. Some of the frustrations you now have are due to the unknown factor. You need to toss the unknown aside and focus on your life and your daughter's life. I have been med-free for 26 years now and have made adjustments such as diet, rest, and avoiding my MS triggers. My life is by no means perfect or without pain, BUT I still have a life and I am here in my sons' lives every single day.

January is a short time away. Put your best foot forward and if you do have MS, let us know because there are people on this forum who will know your pain and have experienced the same tears and frustrations as you. You are not alone. In the meanwhile, know that you are in my prayers.

Michelle127 · 11-16-2008, 09:39 AM

Thank you both for your replies. I am not really scared to face whatever it is going on. I have come to terms with the fact that something is wrong and I am ready to face it. I am just frustrated that it takes so long and that they can do nothing for me in the mean time.It's mostly the fatigue and pain that has me down,but I know I will be ok

Thank you so much for the support. No one around understands or knows what to do or say. I can't blame them but that alone is kind of frustrating. So thank you again jayhawk
And Duncan
I am orginally from Northern California, that is where I was bite. My doctor said that the deer tick that carries it is not in this region but is in northern California. I was bite a long time ago. About 5 years ago. I never devoloped a rash,but after reading about lyme disease you don't always. He said that it could have been lying dormant. But In reality he said he doesn't really believe that-that is what my problem is, but wants to check for everything. I will ask for antibiotics, thank you for that advice. I guess it is all a excluding things. he said there is such a long list of possiblities we have to mark them off one at a time.
I am very fortunate to live where I do now. The health care system here is wonderful. The scary thing is I had no insurance when all of this started. No only did my doctor get someone to do my CT scan and MRI for free but he also helped me get insurance just in time! So there are postitves in this situation.
Once again thank you both