Thank you Betty this info is awesome. My spirits have really been uplifted today .Your testimony is very encouraging, I have had TM since 2002 and I agree with you there is not a time frame for our healing. This is in the hands of God. I reuse to believe this healing will not take place .I regained most of my sensation back in my entire body. I have gone through everything almost everyone else have and at time I still do. I never put my focus on my illness,but on my healer. I just finished 10 weeks of therapy and now I am in a wellness program to aid in strengthening my muscles. My hands are numb most of the time. I can still use them to do most anything with. My feet and hands are hot and cold a lot of time now more than ever. I will not give up on believing I will not overcome this disease. I take care of my grandson who is autistic every day. When school starts I will start back to driving him too and from school .I keep going and keep believing that the next day will bring me closer to a healing. I pray to God for all, that we will be healed and get our lives back, and also thank Him for letting us see another day. If anyone have pain in their hip joints and weak ankles please tell me how you are coping with it. I know my ankles are weak and is causing my feet to turn. You should really see my shoes. I just returned from a Family Reunion in Chicago Via Cleveland and flew by myself. 5 hours sitting and it seemed like I held that position for 3 days afterward. I had my cane with me and used it and was not ashamed. I turned 61 on Sunday and I am really blessed in the Lord. It is not the TM that bothers me but the other diseases that attack my body. I had a life-threatening bout with MRSA in April and almost died. my blood was highly infected. I was going into renal failure with the right kidney and came out healed.That's one of the reasons I refuse to give up on our healing from this disease. God brought me out of that and He can bring me out of this. Be blessed in the Healer, Think on my signature. There is none so amazing as God There is none so amazing as God Peggy Wilson
In a message dated 7/26/2010 8:21:03 P.M. US Mountain Standard Time, jan...@centurytel.net writes: Betty, thanks for chiming in and letting us get to know you and your situation. I wanted to tell you that some of us have had improvements several years after the 2-year mark. So never give up. Your symptoms - fatigue, skin sensations/not, tingly feelings under the skin, pain, banding - are what we are all dealing with, not to mention the balance and walking problems, for those who can walk. That is what is so great about this website. You can talk, vent, recommend, enlighten, etc. We can all learn/help from each other, whether it is emotional help or medical help. I am glad you are doing as well as you are and, please, keep emailing us. We can always use input. Janice From: _Beeclark_ (mailto:beecl...@aol.com) Sent: Monday, July 26, 2010 5:59 PM To: _tmic-l...@eskimo.com_ (mailto:tmic-list@eskimo.com) Subject: Re: [TMIC] TM Info request Hi Craig. My name is Betty, I'm 57 years old & live in northern California. My "journey" into TM started the morning after Easter in April, 2006 (no previous symptoms or illness). I woke w/ a numb right arm. I also had intense pain around the back of my neck & between my shoulder blades. Then I noticed both big toes felt numb. After the Dr. did an EKG, X-ray & blood test, I went home to wait for results. That evening, both legs, besides feeling numb, started spasming & got so bad, my husband went to an all-night pharmacy to get a Rx to get me through the night. At 2:00 the next afternoon my GP finally said to go to Emergency. After an hour-and-a-half MRI & Spinal Tap, the on-call neurologist said I had TM, fortunately at C7 only. However, paralyzed by this time from the chest down w/no hand function, I spent 4 days in the hospital on Solumedrol treatments, which arrested the virus, then was x'ferred to a local recovery center for 4 wks of intensive physical & occupational therapy where I regained most of the use of my legs & arms/hands. My right leg is nearly completely recovered. I still have a hitch in my left leg & went to PT 2X/week. I can walk – though somewhat unsteadily due to balance issues w/the left leg/foot (also intensified by the use of Neurontin/Gabapentin). I've been left w/ a kind of surface skin numbness... I have gross touch sensation (I can feel it if I rub my right leg or upper torso) h owever, if I'm scratched w/ something sharp, I don't feel it. My left leg (the bad one) has much less sensation. Ever since, I've spent every week 2X/wk w/a hand specialist because my hand function never returned completely. However small, I have gained progress over time in strength & function thru the use of splints & various exercises, as well as two surgeries to "re-route" minor tendons to function for the damaged ones. I am now doing my own home-therapy as all that's left is to strengthen & "teach" these minor tendons to take over. Craig, since it sounds like you are experiencing the same hand “dis-function” as I, you may want to consult w/ your Dr. about a tendon transfer for your hand(s). If it looks like something that might help you & your physician would like to consult w/ my surgeon, his name is Dr. Michael Grafe at Redwood Orthopaedic Surgery Associates, 208 Concourse Blvd., Suite 1, Santa Rosa, CA, (707) 544-3400. In addition to my leg/hand issues, I also have no temperature sensation from the bust down. At times of stress, extreme cold or if I go beyond my pain-med cycle, I also get the intense "banding" around my torso. It is exacerbated by a hyper-sensitivity to certain types of fabrics. I can no longer stand to wear polyester-type clothing against my skin. The smooth satiny or polyester knits make my skin feel like it's crawling or burning when I move in them. I now try to wear only natural fibers, although some cotton-polyester blends are okay for a while – just not all day. For nerve & pain management, I am on a 6-hr. med cycle of (3) 300mg Neurontin (generic=Gabapentin) & (1) Hydrocodone-APAP 7.5-325 (generic=Norco). By taking them 4X/day (every 6 hrs.), I keep a more steady dosage in my body. (I was 1st prescribed 3X/day - morning, afternoon & before bedtime; but the stretch in between was too long & by the time I woke each morning, I could barely get myself out of bed to walk to the bathroom. I told my GP I needed to shorten the time in between by taking an additional dose. She & my Neurologist both agreed. By the end of each cycle, I'm more than ready to take the next dose, but at least I am able to be out & about & do minor housework. I'm not so far gone I can't function. Don't know if I'll ever be able to stop taking the meds, but if not, so be it. If they help me function, that's what it takes. While I'm thankful for as much as I've recovered, the loss of hand function & frequent physical fatigue forced me to quit my job of 31 yrs from HP/Agilent Technologies. Even though I'm mobile & can drive myself anywhere, after trying to go back to work part-time after a year of therapy, I found myself way too tired. Working 4-and-a-half hours a day actually meant a 6+ hour day for me, w/15-min. drives both ways & an hour or more to get ready in the morning. I would come home & collapse. It was all I could do. Forget housework, cooking, etc. I finally gave in & went out on permanent disability. Though I miss the social interaction, I don't regret quitting. I was 53 when dx'd & had two teens & a husband. Thankfully, all three, along w/my mom & sister, have been my rocks & have been completely supportive. I am now capable of taking care of my own personal needs, but some things are still very tiring. My 19-yr-old daughter goes grocery shopping w/me every week. She pushes the cart & grabs items too low or high for me to get & loads/unloads the van. I so love this "bonding" time w/her & it makes a taxing chore more enjoyable. I started this task riding the store's electric cart, then "graduated" to using my husband's aluminum hiking sticks to walk the store. I'm now able to walk it unaided, but I am usually pretty worn out by the time we get all the groceries home & put away. I know I've rambled on, but I feel the more info each of us has serves to help others better understand what is happening to our bodies. Each of us discovers new & better ways to deal w/ this awful thing by trial & error. By using this forum, we're able to reach all over the world to help each other get thru each day a little easier. I would like to recommend to everyone w/limited hand function who has difficulty cutting bread or meat, etc. that you try using a "Swedish" knife. It’s an "L-shaped" knife (an upright handle allows for increased leverage when cutting while keeping the arm & wrist in a neutral position). It can be found in the "Functional Solutions" catalog through North Coast Medical, Inc. in Morgan Hill, CA (ask your occupational therapist to get one or go to their website: _http://www.ncme dical.com_ (http://www.ncmedica%20l.com/) & enter “Swedish knife” in the search field). It has made all the difference in the world for me to be able to cut things myself. The North Coast catalog also has several other utensils w/the same type of handle. For those w/diminished hand function, there's also a "Swedish Cutting Board" that holds items down securely so you can cut one-handed. This catalog has a wealth of items for those in wheelchairs and/or w/limited abilities. Well worth checking out! I'm grateful to my hand therapist for giving me a catalog to keep. Life w/TM is hard enough not to do all we can to make it as easier. It goes a long way to help combat depression if normal daily activities aren't so difficult. I don't know how many times I wanted to sit down & cry just because I couldn't open a jar of peanut butter or cut a slice of french bread to make toast. Those little activities aren't so much in themselves, but when you add them up each day, all day long, no wonder we're depressed! Feeling helpless is the worst of all to me... especially since I was always the one helping others. Learning to ask for help, then accepting it, are almost as hard, if not harder, than learning to walk again. The next hardest thing to deal w/ is Patience! Waiting for your body to heal after being struck w/TM is so difficult. And if you can't be patient, you get stressed, & if you get stresse d, you hurt more... & so on, & so on. So try to stay calm, give in to the fatigue when it strikes, & above all, BE PATIENT! I've heard & read it can take two years to recover, & many say after that you don't get much better. However, since TM is not well documented, I refuse to believe they can put any timetable on how & when we can gain more mobility or function. The human body is an amazing creation & amazing things have happened before. Nothing says it can't happen for us too. So relax, eat healthy, exercise as much as possible & be patient. Best of luck to you & God Bless!
